I know I have said this before. One day I might actually learn from it!!!
Today S went back into respite for TWO WHOLE WEEKS!!!! We are having work done. I don't know if it's because there is a definite reason, I.e. The building work, but I felt totally different from the first respite, a couple of months ago! Last time, it was because I had crashed, wasn't doing anything properly,( I can talk the talk, but useless at walking the walk!!! ). It could have been because I had done it before, so that initial feeling had been got through. Personally, I think it was because, this was a well planned time out. I knew it was coming. Not that I had everything ready, was still packing this morning, while the builders were messing around.
So going back to my olde hobby horse, we (ME) all, need to take regular breaks, accept ALL the help we can. I know none of us do, including me! But oh, when you do, life suddenly becomes a lot more bearable. OK! I am tired, but been a busy girl today. Last time I couldn't speak or even try to be social able for the first couple of days. Now I am sat at my sisters, glass of wine in hand, feeling quite relaxed. Because this was a planned respite. I accept not many of you can do this, which breaks my heart. Those that can, make sure you are!!! If you haven't got this facility for long respites, please make sure you are accepting all the help on offer. Even from those that say, ring if you need anything. RING THEM!!!!
Whether we like it or not, none of us are Super person(!) This job is more than a one man band. There are people out there to help . USE THEM!!!!! If not for your sake, then your loved ones. We can't look after them, if we are exhausted!!!
Lots of love
Heady
Written by
Heady
To view profiles and participate in discussions please or .
Oh Heady hear hear !!!!!!!! We all need a break, it is very hard work looking after someone, hope you get some me time as well, as having the builders in. My brother has been very good, I have managed to get two holidays, which seem like years ago, now, even though it was the beginning of March, George has been so unwell, for the last couple of weeks, I really thought that he was going to die, but today he is so much better, fingers crossed he is on the mend. Sending all you lovely careers a big hug, and heady a extra big hug for you Yvonne xxxxxxx😄😄😄😄😄😄
Happy for you Heady. I am so exhausted I can't see straight. Prob will call the VA and see what they can do for me. Stupid aide and she was stupid didn't come today. It seems D said something inappropriate to her. I finally got out of him he told her she had a nice booty. Oh well I didn't want her to come back anyway since everything I asked her to do she did wrong. She left D alone in the bathroom after I asked her to give him just a sponge bath and he was trying to button his shirt. I was so furious. Can't stand stupid and right now have a migraine from hell. Sorry for venting but needed it so badly with no family or friends to help me out I am going nuts.
Hope next time you get an aide with a sense of humour. If she can't take a compliment tough luck for her - better than other things he could have said!
Heady, enjoy your time, you are so right and I am trying in vain to find (good) respite care for my hubby, will keep trying. thinking it might be easier to take us both of to Corfu after watching the new series "The Durrells " last night.....shall we all meet up there and hire a big villa and we can support each other 😊🍾🍷💕
I have that problem Jean. I can't leave C with friends now. They wouldn't be able to hoist him if he slipped off his chair. If I left him in bed I'd have to "train" them how to use the slide sheet to turn him or raise him when he chokes. I don't think any of them would like to clean him when nature calls. I do leave him for short periods with our sons but they can't give him a drink so I can't go out for long. Thank God for Crossroads and the Hospice.
Too true NannaB, similar situation with M and friends. Crossroads are good but even they are reaching point of not being able to provide appropriate service so that is ending. The hospice (2nd one) have said they can no longer look after M in their daycare due to the hoisting and choking issues, at least offered her quarterly respite instead of half yearly from now on, in case we cannot get into the nursing home soon, been on waiting list for 10 wks moved from 12th to 4th so fingers crossed for May. Only day care we are getting now is fortnightly Marie Curie Nurse for 6hrs daytime care which allows me some time out, this is in addition to night service.
Apart from buying care in I don't have any free care. We don't have crossroads in my area. It would cost a fortune and I don't want to be short of money for when it gets really bad [ as you are I know ].
You're right, we are our own worst enemies! The other day I had to tell the DN not to leave me after she gives S his regular enema, as S had fallen just giving him his last one!!!( it's OK, I managed to get him up before it worked!!!). Her reaction was, I thought you could cope, you come across so competent!!! Hey ho. I will have to change that!
Heady it sounds so positive, builders in and out in 2 wks, relaxing with friends and sleeping, wow well done. Agree wholeheartedly about respite but am now M reaching point where home care is no longer fully meeting requirements without me burning out, so next stage in the long road of PSP is full time nursing home, as with early respite: brain says required while heart is uncomfortable, waiting list still long but hopefully by May.
Hope S is happy this time and will come home relaxed as well.
I imagine it will be a tough transition for you, Tim, as well as for your wife, but it will such a relief to have a stable situation for you both, I'm sure. You have worked so hard. I wish you all the best possible, ec
Isn't it amazing how it only takes one person to take care of you...and that's you! If you have to go to the bathroom, you just go.... if you want a snack , have three!
But when it comes to taking care of another's similar needs, it takes 1 person for each need.. ( in a perfect world that is)....I don't know how many ppl that would add up to but sure is more than one! Yet here we are day in and day out...gettin it done !
Enjoy your well earned break Heady, full time caring for someone who can't manage to do the basics for themselves is gruelling. I have my daughter-in-law, two and half yr old grandson and 3 month baby staying for three weeks whilst their new house is being finished. As I watch the two children I realise that Ben is doing, in reverse what they are doing. Learning to walk, talk, potty train, feed themselves and moving towards independence. It is really tiring seeing to their needs but you know that they will learn to do things for themselves. So sad. xx
Katiebow, I am going through the same with my grand children, I watch them learning to do basic things while watching my husband lose his ability to do these things. It is very sad. I said to my husband today, " It is so very sad that Sam, his only grandson, will not be able to see his granddad when he turns 18." Sam is 1 year old. My husband said he is sorry that this happened and knows what I mean. My husband drank alcohol bad for 30 years. He is convinced that the PSP was brought on from the years of drinking. He regrets what he did to himself and the family for all those years.
We have 4 grand-kids that live close. It is good to have family close.
Hardy, you deserve a break. I wish that Health Unlocked would have a yearly get together for all of us to meet. Being a support group in person is better than on the computer. Have lots of peaceful fun time. Xoxo
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Does everyone with PSP have personality changes?
