Please, please can someone tell me, where the bottom of this awful pit is? Keep thinking I can't possible get any lower and lo and behold, I fall at least another couple of thousand feet!
Why can't I stop screaming at S? Poor guy is really suffering at the moment, dog is cowering and I am a complete mess! Even crying down the phone to the doctor, ( not allowed to go near him!!!). He has put me on sleeping pills, don't know if that will work. Hopefully, will be able to hear S if he needs me and cope with tomorrow morning! But I have to sleep. I have to break out of this horrible place I have found myself in. I was doing so well, and bang I hit that brick wall. I hate myself! S has too much to put up with, without me making him worse. Which I am doing! I know I am, his bladder always plays up, when upset. Spent all yesterday, cleaning up Urine, dog and human! I really can't do anymore. While I was clearing up after one, the other was peeing on the floor! And so it went on!!! I understand that the dog will eventually be trained. S is being fitted with his convene on Friday (Please, if anybody upstairs is listening, may it work!) life may improve. But I am doubting my sanity to last as far as that!
What do I do????????????????????????????.????????
Lots of love
Heady
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Heady
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Unfortunately I think it is a bottomless pit. That is what it feels like anyway doesn't it. You are tired, exhausted, fed up and want it all to end but there is only one way it will end and you don't want that either. There is nothing I can say that will really help except our life changed dramatically once C could wear a convene. It's not the answer to everything but it certainly helps. I hope the tablets work but you still hear S if he needs you. Have you asked for sleeping pills for him? They only kept C asleep for an hour and a half but that's more sleep than I got the rest of the night. I now only have one night alone with him but I am useless on Sunday's and sleep when he does. I was a wreck all week before so really feel for you. I still have a nap most afternoons as even with a night nurse I average 5 hours a night. I need more than that.
I hope you get a good night tonight and wake feeling better and really hope the convene is successful.
I cannot say any more than what NannaB has already said. I know with B, going to the gym does us both a lot of good. And yes I take OTC sleeping pills. B takes both OTC and scripted sleeping pills. I know you are tired but I implore you to get some exercise...take a walk 20 minutes....take the dog with you....Life will never be the same we need to create a new normal....so far you got a puppy teaching it new things in life what else would you like to do (Sleep I know) maybe something that will get your mind of crap (literal and figurative) I will take my leave and pray for you Heady......
AVB
So sorry, Heady. I am amazed at how much you are able to cope with. Sleep deprivation is definitely a huge downer so possibly the sleeping pills will help. You know, he might just have to wait till you are able to get there. As much as you do, you must have a break. Praying for you.
Oh Heady my heart goes out to you it really does. It feels like there is no end to it all, as you say one day at a time. You are tired, once you have had a good night sleep, you will feel better.
Hopefully the convene will work, and that will be one problem out of the way. The dog will be trained soon, so that is another problem out of the way.
Heady remember what you said about the full moon, maybe it is a full moon!!!!
Heady you have no reason to hate yourself - this illness would try the patience of Mother Theresa and all the saints .Try to think back a few days when Ollie was giving you a hand with S .and remember how good it felt . There will be other good days but seek some respite even if it is only for a day or two just to recharge your batteries .
I really feel for you, you are always so helpful and encouraging to everyone and it upsets me to read how down you are! We all suffer these low days and think we can't cope with any more, we get angry, irritable and snappy but I know you will get through this with help from all on this site who understand you. You are a strong and resourceful woman who is doing a great job, don't ever forget that!
I agree with what everyone else has said, try to get some sort of break to recharge your batteries and face whatever life throws at you, easier said than done I know, but you need some sort of normality even if it's only a few hours!
I wish there was something more positive to say about PSP but we all know there isn't and we just have to cope the best we can. I know that if the shoe was on the other foot then Keith would do exactly the same for me. We wouldn't want it any different, we have to look after them because we love them!
I so hope that things are better for you in the morning and the day brings some smiles!
Heady so sorry to hear you are having such a bad time. Try not to be too hard on yourself - I think we have all felt as you do at one time or another. Remember that all you can do is do your best and sometimes your best is better than other times. Remember all the nice things you do for S and not just the 'snappy' moments. Hopefully it will not seem so bad when you are not so tired. Try to get some rest if you can and accept any help that is going. I'm sure you will soon recharge your batteries and be back to coping mode. Just about coping is probably the best that any of us can hope for realistically.
Oh Heady, thank you. I have felt so evil for losing my temper, but I know I am not alone! He can't help it and there I am making him sadder. It's so awful. But but but.....we are only human, and oh how sleep deprivation scrapes us raw. And, not a new puppy but I have an elderly cat who is making awful messes. I clean up after one and then the other. The vet sent me home on Monday with an IV bag for the cat, and I am learning to poke the poor dear thing. Awful! And while all I ask is to sleep in on my vacation day, nothing enlivens my sweetheart like my day off. He's up and raring to go....down. And I wake with that awful shot of adrenaline as I feel the house shake with the impact. And I scold him! how mean! I have said "sorry" more often in the last six months than in the previous 40 years. Oh well. On we go. I really can think of folks worse off without trying at all. We do our best. We persevere. And we love as best we can. Hang in there, my dear. We are all in this together. Love and peace, Easterncedar
Right on Easterncedar...sorry about your cat....we had one who was indoor outdoor.....she got kitty lukemia when she was a bout 10 or so and would wee wee everywhere. one day we found her under the bushes panting the vet said she would do this and she did ....I told my distressed son that she was going back to mother earth. we never saw her again...I think that bit of "wisdom" consoled him. We all go back to mother earth as our spirits go their way.
Big hug Heady and i wish i had a ladder that could help you out of the pit. I had forgotten how tiring it is to be on call 24/7 mind you i had good training my 1st born never slept the night thru till he was over 2 years old. Have now clocked up at 4 years of disturbed nights with Brian for some reason he loves 3am (i hate 3am)
think respite might be needed soon. Janexx
Heady I can relate totally to your state. Firstly I cannot function if I don't get my 8 hours (preferably 9) and have made that clear to neurologist from day one. C now takes three sedatives and I take one. I get my necessary uninterrupted sleep and he also sleeps more than he has ever done before. He can no longer get out of bed unaided so I wake to a wet bed each morning but can cope with that and the laundry is a fair trade-off for the sleep. In April I was on the verge of a nervous breakdown, screaming banshee no less. Then I organized two days per week day care for C, 10 -5 and it has really turned my life around. He still doesn't like going but I have told him it is non-negotiable. And it is only 12 - 14 hours per week in total (we rarely get there for 10 and most of the time I pick him up early) and he is with me for the remainder. We are also very dependent on visits from friends here and abroad who make a huge difference by their very presence - and help with garden, cooking, dishes, small DIY jobs. It is still a nightmare and one to which I cannot see an end right now. But I am determined that I shall survive, and you must be too.
Dead Heady, my heart goes out to you even though your post scares the life out of me as I know I will be in your position sooner or later. What I don't get is why the medical world don't step in to help your plight so that you get some hard earned rest but still able to care for S in his own home. You must feel so isolated and uncared for yourself
it is so unfair. I do hope the sleeping pills help, I have been put on anti depressants but still have terrible nights sleep just worrying on what is to come, soon not able to visit our grandson and baby to be born in December, not being able to get into my beloved garden to live in the moment and on and on! Wish I could clear my mind and just accept the changes in our lives. I do hope that the convene helps to give you a break from constant cleaning/washing. What outside help do you get if any at all?
As you say you know it's not S's fault but it it is not yours either and being a mere mortal it is justifiable to scream and shout through sleep deprivation and 24/7 caring. You must feel like a prisoner in your own home with no officer to step in to calm the situation.
I do hope you get the help and much needed rest you desperately need, it will help you stay strong on this arduous journey. Love and a big arm around your shoulder to help you along the stoney path. Xxx
Oh Heady I'm so sorry that you hit that awful wall. Hopefully you feel a bit better by the time you read all our replies. I can't say anymore than has already been said. Thinking of you, love and hugs, maddy
I am sorry i know the feeling i get the same way i do not have any answer that will make you feel better or make anything easier just letting you know you are heard and you are not alone
Usually you are such a rock for the rest of us, but like others have said we all have those moments (days?) when things look so bleak and yet somehow we carry on.
I know I am a different person when I don`t get enough sleep, which is often these days and yet we soldier on.
Chin up and keep battling, we are all with you in spirit.
Hi Heady, I've been trying to bury my frustration inside, I'm tired and G doesn't seem to understand how much my neck is hurting helping her. Have you got a local hospice nearby, if so see if they do a day centre that S can go to, they may have a counsellor there who will see you, I see the counsellor at the hospice where G goes every Monday. Seeing the counsellor every few weeks has been a godsend and allows me to vent.
We (me, GP, consultant, hospice) are trying to persuade G that respite care needs to happen to allow me a couple of weeks away from everything PSP. Is respite care something you've considered?
Heady I am not there yet but have seen the pit before I was given help, carers etc. M is so restless at night and up at least 3 times I do not get much sleep and get angry (sleep deprivation). Luckily I get Marie Curie healthcare nurses in 2 or 3 nights a week means I sleep (?) in another room I still hear the moans and movement but can relax a little as someone else doing the chores. We have tried orimorph (liquid morphine), paracetamol and lorazepam (not at same time but I have been tempted) knocks M out for up to 4 hrs but has consequences with incontinence. GP suggested sleeping pills for me as a means of getting sleep when night cover on but I am loath to take anything.
Do you have any night carers? If not ask district nurse or GP to organise them. Marie Curie Nurses are no longer cancer care only they have changed their emphasis to support terminal conditions. They also provide day cover, I get a day off about once a month which is great.
All I can say is that you and S are not alone and if I could I would come round give you a hug. Tim
Heady...unfortunately the pit is bottomless,I now suffer from polymyalgia brought on over the last years,still cannot sleep at night etc...if you don,t apply some controls your life will be lost too,I know I did not care if I did loose my life as Madeline WAS MY LIFE ,but you just may live ,do what you must to get some rest,love Rollie
I've been through this too, especially with all the urine issues (human and animal). We had two adorable long-haired dachshunds that were 8 years old, but we never could housebreak them. My wife's other carers didn't like cleaning up after them either. I finally made the tough decision that is was time to find them another home, which we did a couple of years ago. We missed them a lot during the first couple of weeks, but over time we got over them and it really was the best decision to make.
As for my wife and her incontinence issues, we manage pretty well with adult diapers (Depends) and frequent trips to the bathroom where I catheterize her (5-7 times a day). Her other carers do not do the catheterization, but just let her sit on the toilet for a while and change her Depends. For a couple of years, we used the Foley catheter. It was awesome! But it also caused my wife to contract frequent UTI's, so we gave them up this past January. I know it's quite different for males, but there are condom-type catheters available and some of the men in my PSP support group have used them.
I've had those near-breakdown moments too, especially when I've been sleep-deprived. I try to stay strong in my Christian faith and sometimes ask for help from my friends and family. I often wonder where we are in this pit as well. Each passing month I see my bride of 34 years getting a bit worse. But I try to cherish each moment with her and try to make the best with the cards that we've been dealt.
I understand too well the conflicted feelings you're having. I've seen a side of myself that I never saw before while going through this unthinkable journey with my husband. It's a side that I hope will never be awakened again in my lifetime. Oh, the angry feelings I have and sometimes (often) show! I feel like a bird or a butterfly with clipped wings. There are no words to make things better.... just the virtual shoulders of friends who understand better than anyone else can. Your honesty helps us all cope with our own humanness, so thank you...hugs and tears.
Heady, I think we have all felt as you do now at one time or another. Thank you for having the courage to say it out loud! Each day is a new day, and a new start. Hopefully today will be a better one for you two. (3 including Ollie)
Primary thing is to remember ALWAYS, he is trying his very, very best to cope with the devastating disease. If he is doing his best you must do yours. It's hard but you can do it, we all can do it. Jimbo
Hey heady, hope today is a better day. I think we've all been in a similar position to you if we are honest. Lack of sleep, freedom (even to go for a pee or shower in peace through fear of mum wandering or choking) no time to yourself, it's bound to test all of out patience! I've started getting angry over stupid little things, even just being woken up in the night! Or if mum falls I get angry as she didn't call me to help or wait for me to get there. Then I feel terrible for yelling and mum gets upset with me saying I pick on her. And I do! Then she says not very nice things to me and we get stuck in this horrible cycle.
You need a break. You need sleep. You need reassurance you are inly human! And everything you do is appreciated even if it's not always said! Maybe see about giving the dog to a new home? And just visiting if that's an option? You have enough to deal with. Mum said she wanted a cat and I refused. Just more added to my to do list. Mum now has to be catheterised at night and although neither of us particularly look forward to it its reduced the night wakenings to 2/3 times a night. So hopefully a convene will help. If I'm honest now I have night carers in I take a lorazepam and stick these swimmers ear plugs in and it's bliss for a few hours. Get help, ask friends and family and the social. Don't reach a point of no return. Yu have to think of yourself in order to help your husband xxx you can and you will get through this in the best way you can and S knows and appreciates that xx
Hi, thank you for your kind and honest words. Still very low. Think something drastic is going to have to happen, to help me out of this horrible dark place I am in. Struggling to get help. Social services have found me four companies that can offer help, asked which was the best for S, she said she would get back to me. That was last Tuesday! Well, this woman will wonder what's hit her tomorrow. I think she is going to be the brunt of my frustrations, if I can find the energy to stop crying and do something about our situation! The much waited for convene still has not arrived! I give up!!! Wishing lots of people very unfair bad luck at the moment!
Hey ho, tomorrow is another day. Onwards and upwards, can't go any further down!!!
Oh heady, I totally understand!! There is not enough help out there and we shouldn't have to reach out breaking points before something is done!!! You need a break NOW! Do you have anyone you can call to ask to stay with S even if just for one night or afternoon? Friends or family? Or crossroads carers ? Or a day centre/respite centre? You have to think of you too! It's not fair to let yourself get broken down and reduced to a blubbering mess. I got so bad at one point I always wanted to cry, I drank too much, I was so tired I nearly crashed the car several times through lack of concentration and I generally hated on everyone and everything. You need help! Nobody in the works can do all of this on their own. Speak to this slow acting woman and demand more help ! Also maybe call the PSP helpline or carers helpline so you can Vent properly (or feel free to call!) What area do you live in? Do you have to pay for any care yourself?
Call in any favours/family etc and get some hours to yourself tomorrow! And do nothing in that time but relax and feel human! Stop being 'the carer' and just be you! You really need and deserve it Heady xx let us know how you are xx
Hi Kelly, S does go to the local hospice, once a week. But they only offer a 12 week course, and he is nearly at the end of his second! They are saying he won't be allowed back, but the nurse is going to ask for me. That's on Wednesdays and Marie Curie come for two hours on a Friday.
The Care Company have just phoned, they are coming tomorrow afternoon to discuss what they can offer, allowing for S's PSP! Also his convenes have arrived, so he is having them fitted tomorrow as well. This is all sounding like that little pink pig flying across the sky, but maybe, maybe, things might getting a little easier. We are self funding, because of that we are put at the bottom of the queue, in everything!
Thank you for your support. It certainly makes you feel not quite so alone!!!
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Need to vent
Putting my foot in it seems to be the new normal
