Just had a melt down day. Charles is in the next stages of PSP and the weekends are never ending. I don't even have a minute to shower or get dressed.
It's the bathroom etc. all day and night.
I just screamed and yelled. Not at him but at the situation. Now feeling low and sad. How can I make it up to him. I can't even look at myself without crying.
And this is only the beginning of what's to come. Help.
Cuttercat
Oh bless you I know exactly what you are going through, this whole situation is an absolute nightmare, take a deep breadth, I know it's not easy but he really can't help it, we've all been there and done that, wishing we could all make it go away but it never will, I'm thinking of you, you will cope trust me, sending you a big hug....
Lots of love....Pat xx
I've been there. You will probably feel guilty longer than he will remember the incident. That is the one blessing. I was so mad one day, I was going back and forth trying to catch up on chores. My husband looked at me and said "I think you're mad but I can't remember why." We are all just trying to cope with an awful unplanned situation. We do the best we can. Please don't beat yourself up about it. We are only human and need to vent so we can carry on. Hugs to you!
You might find daddyt's post on sage advice very timely. I certainly did.
I so know how you feel. I can't get anyone to hear me I am exhausted my husband has a uti that still makes him pant and now he is sitting like Steven Hawking.....I spent hours last night trying to get him back in bed! Adn I am so sleepy right now but had to see how everyone here is doing.....I take it, not so well.....I'm sorry Cc
Ps spent most of htis day in my pjs .....Please know you are not alone and though B doesn't necessarily have dementia....he doesn't really care if I hhave a tantrum....so maybe yours has forgotten and is not thrown into dismay like you are worried he might...He'll be fine now give yourself a hug and and a deep breath and go take a shower....tomorrow.....
AVB
I to can relate , I'm so cranky at my guy right now. Hang in . Wine time for me .. He can stay in the dam chair all night .which I know I won't leave him there .
Dear CC It is so hard at times. i have screamed and lost it from time to time too. We are only human. Do not beat yourself up . Keep moving forward. You are there looking after him . That says you are doing a great job doing the very best that you can. This stage will pass. You will manage one step at a time. There will be some calmer days . It is amazing what we can do when we must. I hope tomorrow is a better day for you. Hugs.
I'm so sorry but as said already I believe our loved ones don't remember. If I'm ratty J ignores me and carries on as normal. This is hugely difficult job we're doing, we're not trained for it, we didn't ask for it and it affects someone we love so much. Don't best yourself up. Tomorrow will be a new start. Xxx
ive had many many meltdowns usually to do with toilet duties.We have all been in the same boat.Try not to think you are awful for shouting.Our dogs just looked at me and thought here she goes again! xx
Yes, the bowels, the unpredictability ugh. That's the worst. I want to keep him dry and clean and I do. But it sure is neverending.
Cuttercat
I have been where you are now, so exhausted with lack of sleep and no help. I crawled out of this awful situation by making as much fuss as I could.
I rang the answerphone of our 'support' team 24/7
I would say It's 2am I am up and awake because .. I would ring again at 4am and report why I was still up.
I rang the GP daily.
I also rang Social Services Safe guarding to tell them that both G and I were at risk of serious harm having to continue to live in a situation with no support 24/7. That was actually what got all the other services moving.
It took 6 weeks to get help in, this was through an agency initially and then we got a proper support package in place with Marie Curie night sits (since mid November) and 2 days for G to attend a day centre (had his first 2 days last week) that he actually enjoys.
There may be a charge depending on your circumstances, but there is also something called continuing health care (If you are based in the UK).
The saddest thing is that when you are at your worst, sometimes we have to work the hardest to get this help.
Thankfully this does not apply to everyone, but if you can do it, start contacting the professionals to let them know how difficult it is for you both.
Good Luck
You must be exhausted and emotionally drained.
When my dad lived at home my mum was his full time carer then through social services she had carers come in twice a day. Although my mum had this extra help you could see she still couldn't cope. My mum was becoming snappy at my dad and didnt have any time for herself. If she popped out it was the thought of him getting up from his chair and falling. It was only when my sister came over from Australia and stayed with them did we all realise how stressful and hard work the situation was for my mum.
It was then we decided to place my dad in a nursing home. We were all heart broken and my mum feel very very guilty however we visit my dad and it's a different care for him now we can sit and communicate with him my mums not stressed. Mum misses him dearly as they have been married for 52 years but understands it was killing her looking after him.
Xxx
You are doing one of the hardest jobs in the world. Of course it's tough! If you do get a few days off, you will probably be replaced by a whole team of people! You need to approach it like a military exercise. Your day should be scripted hour by hour. Have a routine and find a way of building some "you time" into it. You are the machine now. If you break, it all breaks. When I was caring for mum I found a way to race to a gym class twice a week, and I took extra care of my diet. By the time mum died I was fitter, stronger and leaner than I will ever be again. The gym may not be your thing, but you must find something that sustains you, and you must fiercely defend your own importance. I too got snappy once in a while, but every night, before I put her to bed, I hugged her tightly and told her I was glad that we had that time together, and that given her circumstances, there was nowhere else I would rather be. x
i know its hard ive been there myself, you have to be strong for him and i know thats not easy, if you want to cry or scream dont do it in front of him, and pray your way through this i did as im a believer in christ, and my partners dead 15 months and only he got me this far. the lord is our refuge and strength in times of trouble, he will not leave you or forsake you. god bless you at this sad time
I know, I know. That's part of my sadness. But seek forgiveness on all levels.
Cuttercat
Everyone in your situation has a meltdown and with me it was usually to do with bowels or equipment that didn't or was difficult to get working. I would shout at God, shout at the world but always made sure my darling understood I wasn't shouting at him, lots of hugs and kisses after a rant with a few tears while I told him I loved him and would swap places if I could.
It does end, and not how we would like and I am grateful that I can look back and not feel guilty about anything. So don't beat yourself up. He knows you are doing your best, just keep reminding him how much you love him with kisses and cuddles.
Sending you a big hug.
XxxX
Could have been me writing the same post many, many times. This awful PSP makes us all behave out of character - it puts enormous strain on us carers and heaven only knows what it`s doing inside the heads of our loved ones !
Sounds like you need some respite care. Have you had any respite yet ? If not, make it a priority to find somewhere that will suit you both ASAP and book a week. It was regular respite that helped me keep P at home for as long as I could until he had to go permanently into the nursing home. At least it was familiar so it wasn`t such a strange experience for him. If you wait until it is a crisis you may not have a choice of where to go, so do it now before you reach crisis point.
xx
Hi, like everyone has said, we have all been there! I use to regularly shout at Steve, the situation, the dog, anything that got in my way. We have to vent our anger, we would explode otherwise.
My first comment would be, since when was it a crime to shout at your husband? You no doubt, have been doing it for years, so why now do you feel guilty?
Second, my personal view, me shouting and screaming, was just as much a symptom of PSP as everything else. I was put into a heartbreaking environment that I didn't want to be in, had no training and didn't have a clue what to do. I was exhausted, frustrated and bloody frightened. So yes, I let rip on more than one occasion. That didn't make me a bad Carer. Nor is it making you one.
What helped me cope with this totally unnecessary feeling, was counselling. Accepting that getting frustrated and upset, was part the PSP journey, made life a bit easier to deal with.
Cuttercat, be kind to yourself, make sure you eat properly, get regular respite breaks, if only for a few hours. Go out and breath. Most of all ditch the guilt, you have nothing to be guilty about. You are doing an amazing job, looking after your husband. Never EVER forget that.
Sending big hug and much love
Lots of love
Heady
Heady, I have just done Bs tax return. This year, I had to fight the computer all the way. Hope you get it done without too many Gremlins in the system. I couldn't get it to accept that B wasn't working. I shouted at the computer, " Look at his age! Why should he have a student loan!!"
I told my daughter who said ruefully," Mum, I will probably still be paying mine off, when I am Dads age!"
Good luck. Big hug. X
Thank you Heady! I'm feeling more centered today but fearful I may let loose again at some point. Oh well. Charles and I are in this together and I have to focus on that; just like you and Steve.
I think we're approaching the "vigil" stage, when everything just slows down. As for today, I'm grateful for you and everyone here who help me each and every day!
Cuttercat
The secret is to try and recognise when things are getting on top of you, that you are about to explode and take some time out. Phone a friend or family member to come and join you for a few hours. My sister regularly stayed over and we would open the wine, put the world to rights until late. Having that extra person around, took the pressure off and I was able to cope again.
Lots of love
Heady
Thank God for this site! It makes sense of the frustration, exhaustion and the guilt that PSP brings. I try to remember to tell B that I am shouting at PSP or the situation and not him. When I do this, it helps me to not feel so bad as it is true. Do try to get some help. We now pay for carers to come each morning to get B up, dressed, showered and shaved. It gives me time to get ready too. I started with help for three quarters of an hour on two days, and got him ready myself on the other days, then increased the days when I realised the benefit I got from it. You can get financial help with carers if you need it. Speak to your GP/ Social Services. Hope you get help soon. God bless, big hug. X
I also have carers on the weekdays so I can shower and get dressed as well. Can't get any help through social services, the US isn't very helpful. We are in Hospice now at home and only get one person three days a week for an hour.
Thank god I got my own people.
Love,
Cuttercat
We have all been exactly where you are. I've certainly screamed and shouted many times, and felt guilty and ashamed afterwards. It's normal under these completely abnormal circumstances in which we find ourselves. As Heady said, since when is it a crime to shout at your husband? There's a fine distinction, but I found that I most often found myself shouting about things that he 'should' have been able to control. Like when he wet the bed, but didn't tell me, so the clean up operation was so much bigger than if he had told me straight away. Strangely, with things that I know he can't control, I seldom get angry. I give hubby hugs and kisses and heartfelt apologies after every bad incident. He knows I love him, and luckily he loves me enough to understand and forgive me.
All the advice above is so valid. I fought the system for months until I could get a nurse in every day. I've been going to the gym religiously since April last year and try to eat better. When I really feel like I can't cope, I go and lie down in the bedroom by myself (not in the sitting room where he is, but where I can just find some space and quiet to breathe and collect myself), or call my sister and vent, or just go and eat some chocolate.
Don't be too hard on yourself. This is the hardest job in the world, and the fact that you lose it sometimes is testament to how hard you are trying, and how much you care. Just remember, in your lowest moments, that you are not alone; we are all right there with you.
Hi
Try not to panic, I told Rog last week if he moved when told not to And breaks his hip I will not have him home, felt dreadful but meant it at the time.
What help have you coming in? You need adult services input, hospice and DN's , maybe time to think about applying for CHC funding. Urinary problems and bowel management needs to be facilitated by DN's ring them first thing Monday. We have restful nights since catheter went in, disadvantages I know but hey!
I am assuming you are in UK apologies if not a this is not applicable.
Any reassurance the illegal they get I have found makes the caring logistically easier.
Much empathy
Julie x
I'm in the U.S. and we don't get much in services but I have some of my own and caring for him is getting harder and harder. The catheter will help and I'll push for it when they say he is ready. As for the other, oh well.
Thanks much,
Cuttercat
Hugs to you Cuttercut! You are no worse than the rest of us! We have all shouted when we shouldn't have or at least that's how it feels. Actually as so many have said we are suffering from this bloody condition too! In a different way perhaps but it still causes immense stress.
So stop thinking you are a terrible person...you are not! You are just like all of us.
Take care
Marie x
I can relate! I am an emotional mess - thank God there is a light in the tunnel. I have reached out to Hospice and they are taking my hubby for this coming week-end to give me a break. I have mixed emotions about it - feeling guilty on the one side, and as if Easter and Christmas arrived on the same day, on the other side.....
Ditch the guilt. I defy anyone to care for PSP without having meltdowns.
Like others I do try to compensate by telling him how much I love him and how its PSP I'm angry with. Sometimes it is him when I feel he could be more co-operative. We've always shouted a bit but its one-sided nowadays.
We are permanently stressed and tired, of course we lose it.
Hope you get more help.
Big hug from Jean xx
I've read all the posts and agree totally. My language has widened enormously since hubby got worse, and not for the better either. But it helps me to vent, and then I cry because it's not gers fault. Can't win whatever we do. Heh ho. Onwards. Marie
He said, "I'm dying today."
Respite but not respite
