After 683 days of caring for Mary I have admitted failure and called for help. Mary cannot communicate, is now very rigid and unable to move. She started to make it difficult to take her medicine and feeding her takes forever. It was this that led to my frustration and the risk. Her vitals are thankfully strong, she sleeps well. I, on the other hand, do not and I am exhausted and emotionally drained. I was worried that this would manifest itself in me hurting Mary so I, in effect, safeguarded myself. The system kicked in very quickly and Mary will go into a nursing home for 1-2 weeks to give me some respite. I worry about not being there for her and placing her in the hands of strangers. I know it is the right decision but find it difficult to accept.
I reached breaking point: After 683 days of... - PSP Association
I reached breaking point
Good for you. It is so hard to admit defeat but although we love the person for whom we are caring we all reach a point of knowing that we cannot do it on our own. It is not a failure. You have done brilliantly until now and Mary will be ok and will be cared for so now you have to look after yourself and recharge your batteries. Try not to worry about the future, make the most of today and then go one day at a time. Hopefully as the system kicked in quickly they will organise a care package of help for both of you for when the respite ends. Maybe you will have to insist on this before she comes home but hopefully not. Good luck. Recharge and try not to feel guilty. You are a human being with your own needs and that is important to remember. Love AliBee xx
Not failure at all rob you just need a break and have done absolutely the right thing asking for help.
You need to take care of you for a little while
Sending you the biggest hug
Lynda xx
Hi Rob
Yes, I've been there. It's gutting.
I do hope you get some decent respite. We all need that.
At first I felt guilty and a failure. After a while I realised that a staff team were able to give the level of care that one person could not give, even with carers coming in.
I know you are just getting respite at this stage, but I would add that now Liz in in the Nursing Home I can concentrate on having a relationship and doing nice things for Liz.
Rest well
Best to you both
Kevin
PS Adding: As we know the government is finally focussing on the Social Care deficits. A Commons Committee published a damming report last year along with recommendations. One of the issues was the huge burden on carers at home and the poor support.
Well Done Rob! That is not a failure, but a very brave desicion. I too, reached this place, (quite a few times actually). The first time, my daughter stepped in and I was sent away for a few days. After that I did accept help, took a while to get it into place, so I crashed again. Then I decided respite was the only way forward. Steve would go into a nursing home for a week at time on a regular basis. Down to once a month, just before he died. My motto, by then was, he either stayed there full time or part time. The first time he was in the home, I watched two carers struggle to get him on and off a commode, which I did on my own, with my eyes closed and I wondered why I was so tired!!! I know it's hard, thinking of strangers caring for Mary, remember though, they are trained, I don't know where you last attended a training course for caring, I went to mine in La La Land!!!
Please, please accept all the help you can, think I will rephrase that, DEMAND HELP!!! Nobody can do this alone, not you, not me, not anyone else on this site. You have not failed, just realised at long last you ain't Superman!!!
Sending big hug and much love
Lots of love
Anne
Rob, l am very proud of you. Asking for help & getting it is a small miracle in its self. Rest now... you deserve it. Sending hugs... Granni B
You need a break! Caregiver burnout is a real issue and once it happens everyone involved becomes at a higher risk for injuries. If you don't already have help while at home use this break to arrange some, even if just for a few hours couple times a week. You are doing the right thing and don't feel bad, helping yourself will help her also.
Ron
Thank you, I have all the help but still need a break. The help will come back when she returns.
Rob
Everyone else has said it really but just wanted to add my support. You like the rest of us are only human. Nobody is superman or superwoman!! You did the right thing. Very glad you did. You need to learn to rest now. Switch off. Cry if you want to but remember to tell yourself you have to do it this way. In the end both of you will benefit from what you did.
Hugs to you.
Marie x x
Well done Rob. Knowing when to make a change is not easy. I hope you are able to have a real break so you feel refreshed.
I know how hard it is to allow your loved one to be out of your control. But we all have had to do it at times.
Love from Jean xx
I totally agree with the others, you are definitely NOT a failure. You are doing a brilliant job looking after Mary but the body can only take so much and you have reached that point. So while Mary is in respite it's time to use those caring skills for YOURSELF, then you will be in a better place to care for Mary when she returns home. So make that list of nice things you like to do and do them.
Lots of love Nanny857xx
Ps. As I'm writing this to you, I need to take the advice myself. 😂😂
You deserve a complete break from full time caring and I glad you recognised that fact before you actually broke down. It may be that you decide it is the best option for you both that Mary stays full time and that's nothing to be ashamed about, as Kevin says you can spend better quality time with her. See how you feel after your break but don't let your heart rule your head just do what you think is best.
Sending love
Kate xxx
💙 I really DO understand how you feel. It’s unbelievably difficult. I hope the respite helps.
Hi Willow_rob!
Especially for the caregiver, rest and sleep well is essential. Combat stress, too.
From my experience and also from my group of caregivers, it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregivers, far away from the PSP problems. At least ten days of holiday each six months are essential.
As Bill F (Smart Patients) said: “As we look back on where we are, we have a wonderful support team of medical professionals, fitness trainers, church folks, nonprofit groups, friends/neighbors, paid caregivers, family members. It's absolutely amazing. Start now to build your team. You will need them, and they'll all want to help.”
As say JEN2017 “nobody could/should go through this hard disease alone. Especially the caregiver”.
Finally, reproducing the phrase of Anne-Heady: "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"
Hug and luck.
Luis
Hi Rob - just want you to know that we echo everyone else’s comments on here. Providing ongoing care, even with the help of others, is draining and for the carer’s own health and mental well-being, it is essential that they are able to take a break. A few weeks’ respite will give you the opportunity to recharge your batteries and become Mary’s partner again rather than her carer. Sending you both much love and if you feel like a chat, please don’t hesitate to give me a call. C xxx
Dear Rob
How brave and sensible to
Put your hands up and say too much. Many carry on beyond this point to there own and loved ones detriment. I echo other posts whilst Mary is safely in respite you must rest and then make some decisions. As Kevin said the transition to permanent residential care is hard but now enables him to be a husband again.
I found that a few days of respite gave me a little perspective and I was beginning to realise we were not far off ‘ not coping’
Please look after yourself now, rest and recuperate - I know not easy when you are away from your beloved.
Sending you lots of love and a big hug
Tippy xxxx
I endorse all that has been said. As carer for my wife, like you, to lose full control to others is not easy but so pleased you have been able to. Best wishes, David
We've had to do the same with our father, not the same issues but my 82 yr old mother could not physically copy with my 86 yr old father. He's happy and settled, he also cannot communicate, eats and sleeps well...... 
You did not admit failure, you have not failed, you have recognised that for you to continue giving Mary the best care, you need to take a little care of yourself. We all need some downtime to allow us to give the best to our loved ones, there is nothing to feel guilty about. Take time to do somethings just for you whilst Mary is being looked after and once you have restored your energy levels think about what can be done in the future to stop getting into the same position again, whether it's full time nursing home, regular respite, a sitter once a week to give you sometime to yourself or more help at home - doesn't necessary have to be care for Mary but someone to help you with the household chores, might make a difference. Personally I finding feeding Mum one of the most distressing things - I'd much rather sort out toileting than feed her and so I get the carers to feed her other than a couple of times a week and feel she eats better with them - less emotion involved and the power of the uniform. Are there some tasks that you could pass over fully to carers?
Enjoy your time off (don't feel guilty) and catch up on sleep & friends. xxx
I can only repeat all the comments here. I almost reached melting point caring for my wife. Finally social worker and medical staff recognized it and persuaded me to accept help. What a difference it made. You have not failed. You are only human, not superman. Wishing you a restful break and smiles when Mary returns home. Hugs and prayers for you both. ♥️🙏
Please don't beat yourself up about seeking help.
You are most definately not a failure.
Look how far you've come!
You have done your best and gone above and beyond for your loved one. Mary knows how hard you tried.
I think you have made the right decision for both of you.
You need all your strength now, especially emotionally in the months to come, it won't be easy but let her know how much you love her.
I wish you both well.
Big hugs.
Sue x
Hi Rob surely this is not your first respite if it is you are amazing I put my husband regularly into respite and that’s the way I cope
Please don’t
feel guilty it’s just respite try and so something for yourself in this time
Regards Irene
Hi Irene, yes it is the first because I couldn't bear to be apart from Mary and I am having to force myself not to go and see her for a few days. However yours and everyone else's comments have been a great comfort and I am now out on my bike regularly which helps me clear my head. Thank you Rob
You take a good break. Its very hard and stressful looking after someone with PSP. It's mentally draining. I loved my twin sister to bits but her husband and I found it very difficult at times. You take care
Mary is lucky to have a carer who admits to needing a break. I wasn’t good at that with my mom, but my husband let me know I needed one more than a few times! I would say the sleep deprivation is most concerning. Maybe help at night would be best, if your home can accommodate that? Even a few time a week. I don’t think anyone can do a good job - at anything - without adequate sleep. And then perhaps you’d be able to rise early and sneak in a “head-clearing” bike ride before starting your day with her? Just thoughts. Enjoy now and reevaluate once she’s back. I know the readjustment after the breaks I had were always telling. Be kind to yourself; I’m sure that’s what Mary would want most. In solidarity...
You are doing the right thing and certainly not a failure on your part, you need a break , recharge yourself and get some rest, you have done a great job looking after Mary.We all need some respite at some time.
All the best .. Peter and Kathy
Rob,
I applaud you for recognizing that you had to have a break. I remember how hard that decision was for me. The first time I arranged respite care for my husband, I couldn't do it and backed out at the last minute. Finally, circumstances forced me to move my husband into a care home. It may have saved my life. By the time I could have finally brought him home, it was easy to see that we were both better off if he stayed there. We never think someone else can do it as well as we can. It was a little rocky at first until they learned my husband's preferences which they were more than willing to accommodate once they understood what he liked and, more importantly, what he didn't. My husband was there for nearly two years before he passed away in May. I couldn't have asked for more caring caregivers than he had during that time and I was able to get a little part of my life back during that time. My experience has taught me that the patient and the caregiver are both important.
This is a start for you in taking care of yourself too, I hope you will enjoy your respite time.
Take care,
Pat
My wife goes in respite one week every month. I make certain not to visit her but her carers do visit her on the hours they see her at home.
it works well although a week seems too short. but it would be unfair to her to take a longer respite.
but things are rather different in your case. DO NOT feel guilty about taking respite i found that I need it very much
Just adding my agreement with all the others Rob - You did the right thing 👍
Take care of yourself: "put your O2 mask on first, then you can save your dependent's life"
❤️. Anne G.
So true 😆👍 and thank you,
Thanks for sharing that Rob. I think you have given us all strength to keep on keeping on. For me it is to know what to do when it is time. A time which is coming closer. I too am trying to set up the respite. I find the paper work a bit overwhelming but will get to it hopefully before I blow my fuse. Take care. ... val
Thanks Val. Are you CHC funded. If you are (and you should be) then the system should organise respite. I blew a fuse and called the District Matron who got the CHC fund coordinator on the case. A nursing home place was arranged for the next day. I took the hard decision not to visit her for a few days but had to drop additional stuff off and popped in to see her. She is fine but the visit set me back with feelings of guilt and recrimination. I have to take an even longer bike ride to clear this. Take care. Rob 😆
Thanks so much Rob. I am in Australia. I am alright at the moment. I have plenty of support and services but have put off getting the paperwork together. We moved house 18 months ago and have never sorted all of the boxes of stuff as things have moved fairly quickly. All is well so far. cheers ... val
Really hard decision but will really help. Before I became carer to my lovely husband with PSP and dementia I was in charge of a community hospital. We had respite beds and were a great help to carers . Yes we needed to let them know their loved ones would be cared for and safe and once they found this it opened up a new life in that they refreshed themselves and were able to continue caring. Look after yourself (words my daughter keeps saying to me but do we listen?)
Love and hugs
CBD - my Mum's journey so far
I need advice
Drinking/eating aids?
End stages? not sure, any advice
I love you
