I am new here, although my partner was diagnosed with PSP about 15 months ago. I think he has had it for 3 or 4 years in truth, like many he was initially diagnosed with Parkinsons and later amended to PSP as more people got involved.
He is currently at the stage where his speech has gone, he whispers and I have to put my ear next to his mouth and still very often do not catch what he is saying. If he stands up he falls immediately, and I have had many a sleepless night down in A&E whilst he waits for stitches etc, as he has tried to move from his chair to the commode in between the daytime carer visits and my getting home from work. He drools a lot, and has recently not been able to finish meals, even when I am feeding him, which I have been doing on and off for the last 5 or 6 months.
We have been very lucky with Social Services, as they have installed a through floor lift in the living room/box bedroom for him to get up and down stairs, and we are looking at possibly converting the second bedroom to a larger bathroom as the system won't let the carers take him into the main bathroom as it is down a very narrow alleyway, so he is currently having stripwashes in his chair downstairs.
They are also in the process of organising one of those concrete ramps from the front door to the gate, so I can get him out in his wheelchair more easily. Fortunately I bought a Meriva last time I changed car, so I can get the wheelchair and him into the car without too many problems.
I have a full time job, working about 42 hours a week, so during the day we have 3 carer visits to get him up, washed ad downstairs and then a couple of welfare visits, then when I get home from work, I have to do the evening meal, and look after him all evening and night in bed.
I try my best, but I hate myself as a carer, as I am someone who lets their frustrations get the better of them, and I end up shouting and getting stroppy when we can't get a point across, or when he needs to go to the bathroom for the umpteenth time that day. I hate myself for doing it, but I just can't stop myself, I think its the way my full time job, and full time caring, and the tiredness etc comes out.
Its been one heck of a learning curve, and I don't think I'll ever bottom this horrible disease,we have no idea how long he might have, but I love him with everything I have, and will do anything I can to make life easier for him. I just wish I could stop myself form getting to wound up!
Sorry for the offloading, I'm sure this kind of post is a regular occurrance on here...
Thanks
Derek
Written by
Ratcliffe
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Sorry to hear about your partners diagnosis Derek. Do not worry about venting off steam on this site we are all in the same boat and going through or been through the same situations so let of some steam here. On something you said about a new bathroom consider a wetroom rather than conventional bathroom/showeroom. Advantage is less clutter and so less things to break with falls easier for carers to get patient to shower or toilet. May be you should discuss with the Social Services OT. We all get short tempered and shout at our loved ones sometime so try not to beat yourself up. May be you need to ask your GP for some night cover from Madame Curie Nurses, Gp refers you. Also ask your GP to refer you partner to the local Hospice for some day care more sociable than home carers all the time even if only a day a week. Have you applied for PIP as I assume your partner under 65 yet and carers Allowance for yourself. Social Services should be able to help if not try CAB.
Hi Derek , welcome to the site but as I always say, sorry you had cause to join.
I'm not surprised you get frustrated and stroppy with a sick partner and a full time job and interrupted nights. I had to struggle not to lose it when I was in that position, still do sometimes, but I was fortunate enough to be of an age when I could retire. Tim has some good suggestions. Getting your partner to a day centre at the Hospice or other organisation would be of great benefit, one being he would be able to have a meal there to save you cooking. I love the fact that I don't have to cook on Fridays and I treat myself to a meal out, ready meal or takeaway, with a glass of wine of course.
Keep posting, offloading or sharing funny things that happen as well.
Dont let your self get the better of you I do the same thing get discouraged I have a loud voice anyway and I am always what I think is snapping I have no patience but others say I do I sure dont see them , shit I cant stand my self half the time I dont know why she puts up with me but she knows I love her and would never leave her there is just so many things to do to make them comfortable they hate it when she gets a URI and they see me coming to the hospital I have so many instructions to what makes her comfortable and I know most woulnt take the time of day to do those things but I know she cant do them herself , just hang in there it gets harder and harder but when you love some one you will go to know leghts to just love them.
Hi Derek, good suggestions all over the place... look after yourself too, maybe hard to achieve, but important. And if you need to save your venting for here, go for it. I'm living with my parents at the moment, helping to look after my dad, and my mum's in the same shoes (both retired though, so no workload on top of everything else). She's very short tempered (and old and frail) so doesn't need much to lose it! Luckily, we've built a stronger network over the last year so she can call on people (outside of me) to help out, in between visiting nurses, PTs, speech therapist... and with me here, she goes and sees friends regularly. So, you're not alone even if it feels like it. And when you need that break from work AND caring - take it.
Thanks for the replies, it means a lot. I always knew it wouldn't just be me feeling like that but it is nice to have that confirmed, if you see what I mean.
To Amilazy: The bathroom conversion if it happens would be a wetroom, that is what they have designed, with a large shower area with a foldup seat and a Clos-o-mat toilet system, which will help a lot. It also happens to be the room next to the one with the lift in, so would mean less staggering from the lift all the way along the landing
Thanks for the advice on PIP, but my partner is 76, so doesn't get any of those, however he does get the higher rate of Attendance Allowance, which we use to pay for the carer visits during the day whilst I am at work. I can't get Carers Allowance because my salary is over the (very low) limit, but I think that's why he gets the higher rate of AA.
Hi there I'm sorry to hear about the diagnosis. My dad too was diagnosed with psp after going down a long medical diagnostic route. He must have had it at least ten years
Unfortunately this Christmas Day he quietly slipped away just after the grandchildren had opened their presents. It is a terrible, degrading disease and looking back to his final days now I can see just how sick he was and we were just trying to keep him alive.
God bless dad we love you always.
Please have the strength to carry on its hard but hardware when they have gone xx
Your partner sounds as though he is at a similar stage to my husband and I often lose my temper and then feel incredibly guilty as I know he can't help it! It's so hard to keep calm when we are under so much pressure and so tired with the endless trips to the loo and the fact that we now have to do everything with no help from our partner.
Please don't beat yourself up about it, it's a perfectly normal reaction and I don't think there is anyone on this site who wouldn't say the same thing!
We are all in it together, to help and advise each other and to sometimes share the happier times which there will be I'm sure!
Keep strong and keep posting you will find lots of kind supportive friends on here....
Hi Derek, like you, I also lose it regularly! My excuse is, if I am shouting at him, things can't be too bad. I never shout if there is a serious problem! S is my husband, I use to shout before, it would not be natural, never to shout at your partner. Well, that's my line and I am sticking to it!!!
I am having counselling now, which is helping. She has taught me, there are two ways to deal with times like this. The four R's. React, retreat, reflect, regret! OR try the three R's way - Retreat, reflect, react!!! Basically, it means, in a situation, where you would normally flare up, Retreat for a few seconds, leave the room, turn your back, take a very deep breath, think what is happening, it's the illness, not your partner, then you can react, deal with the problem, slightly calmer! Doesn't alway work, but I am finding, if I can achieve my 3R's, I don't shout so much!
The other night, when just going to bed, he took his time to sit on the loo, with the obvious consequences, urine all over the floor! I lost my temper big style!!!! If I had remembered my 3R's. I would have taken an extremely big breath, got him up and into bed, then clean the floor and go to bed CALM! But no, I screamed, got upset, still had to get him to bed, still had to clean the floor, but could I sleep? no chance!!!!
None of us "enjoy" being a Carer, just because your loved one has a life limiting illness, doesnt turn you into an "Angel" overnight. We ALL lurch from one crisis to the next. What can you do? Exactly what you are doing, everything that YOU are capable of doing. Just remember the most important thing in your partners care, is that YOU are fit, healthy and as well rested as is possible. He needs you to be at the top of your game, so as selfish as it sounds, YOUR needs have to come first. A bit like on plane, when they say "put your own oxygen mask on first, before helping others!!!"
So take that deep breath, realise that you are coping. Stop beating yourself up, for not reaching the standards you think you should. Let's face it, none of us can do that, because we all think we are failing, because our loved ones are not getting any better! We can only do our best and you have already stated you are doing that!
Thank you Heady, I have written the "Three R's" down, it will become like a Mantra to me. What you describe is so true. I have spent many times on my knees wiping the floor or cleaning the carpet sobbing,"I can't do this any more", but I now know that I can and I will. Making a little space gives time for reflection, I used to be quick with my responses. I try to be more reflective now, not always successfully, but saying these words before acting, will help. I know I will never be the perfect carer, but like you say, we can only do our best!
Well done Robbo! I'm afraid I'm still struggling to come to terms with the 3R's! I do the 4R's beautifully, a real expert!!!! One day, one day, I will succeed ✈️🐷🐷🐷🐷✈️
everyone on this site has done all those things so no guilt on here! hate the word carer does not describe our role and when did we apply for the job!!
rant and rave as much as you want, i have learnt over the last couple of years just take each day, if you have a hospice nearby get referred asap they have been invaluable.
So hard not to get irritated and cross with your partner , I always have to stop and remind myself that they haven't chosen to have PSP and they need someone to care and look out for them. It must be very difficult having to work long hours knowing that someone who depends on you is at home. My heart goes out to you and your partner and I hope you find a way of coping with the work/home balance. Hang on in there as they say.
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