Hi friends just sitting here on my own having a cry. For the first time mum has done diarhoea all over the bed in her sleep. Mum is currently on the loo and im putting 3loads in the washing machine and its only around 5in the morning. I am so sad and angry from this wretched disease.its just so awful. Mum seems more confused and bewildered than usual. My brother has gone to work and his wife is having her beauty sleep. All of you out there taking care of a loved one with this disease are all super heroes. I am seeing my beloved mum and my best friend deteriote day by day and its heartbreaking. The only people in this world who i truly loved have gone dad passed away september 2019 now mum is slowly going. I have no one else in this world . Half of my heart went with dad now half is going with mum. I pray for everyone going through this. May you all stay strong. Hugs to you all. 🌷
Having a bad day i hate this awful disease. - PSP Association
Having a bad day i hate this awful disease.
Hi thought I would reply as in the UK as well(and I think a lot on here are in different time zones).
Sending big hugs your way. My mum has CBD, she is coming to live with us in the next few months, Essex, still in middle stages and quite mobile, but I can see the road ahead. She has started to have incontinence problems and is such a proud woman, these diseases are horrendous for dignity. My heart goes out to you both.
I hope the rest of the day is better for you both.
Aah thankyou so much for taking the time out to respond. Its very tough mentally and physically. After cleaning up and showering her i gave her some breakfast and tea then let her lay down. My darling mum was exhausted she was on the toilet for hours. I had to get on with more house chores while she was resting while i had a chance. Thankyou again and a big hug to you too.🌻
hi as you are living in essex caring for mum do you know of any groups around. I am caring for my husband with p.s.p it would be nice to chat for advise etc
Hi Poppypolo and Araucana, there's a new PSP support group in Essex and East London being set up. PM me and I can give more details.
that sounds interesting where about will it be
Can you PM me and I'll tell you more.
hi what exactly do you mean pm you
It's the private chat facility. I've just sent you a message so if you click on the notification you should see a little more.
hi doubleheader I would be interested in the one in Essex I did here that there was one in brentwood is that the area
Hi. I'm also in Essex. I lost my mum to PSP last year. If you'd like to share/chat, please get in touch
hi thank you for the reply how did you find coping with p.s.p and a mum, I do find Essex is quite hard to get thinks moving with help and advice did you find the same
You need rest more than your sister-in-law needs her beauty sleep. I would have taken the sheets and piled them (carefully) on her bed so they’d be there when she woke up.
You’ve been truly wonderful with your mom but allowing the others to get away with doing nothing just isn’t working for you and it hasn’t worked in a long time.
Oops — Looks from my reply like you’re not the only one hating this disease today.
Thankyou for taking the time out in responding. I am very grateful. Ha i wish i could do that but my brother would hurl abuse at me if i did. I have tried before to ask them for help but got shouted at by my brother and she just shakes her head and rolls her eyes at me even if i sit and have a breather for 10 mins. 😬
hi Cinderella so sorry you are going through this I hope you can get some help with it all
We lived in Essex but ate in Australia now thank god I think our support system is better here
I feel for you my husband was diagnosed in 2013 still going at the horrible stage now just hang in there your mum will be so grateful even if she can’t show it take care lovely lady x💕
Thankyou for taking the time to respond. So kind of you. All we can do is try our best because we love them so very much. Thankyou again. 🌷
Cinderella80, I realy feel for you, having had the same experience several times with my wife (PSP, UK). It is hard, but I agree relatives should be engaged as much as possibke otherwise you will become ill, I know. Thinking of you.
Thankyou for responding. Im afraid that people are so ignorant and selfish especially own relatives. My uncle came round the other day and even though i explained to him that mum understands everything he continued to talk about negative things around her which lowered her self esteem. He continued to put her down. Maybe its better negative relatives keep away.
Oh Cinderella, feel for you. There are days where everything is so overwhelming. I hope that you insisted your sister-in-law looked after your Mum later in the day whilst you had some sleep/a rest. If not, then another time something similar happens you must. If necessary go out for a few hours, park up for a few hours and have a good bawl. Walk/read a book/nap. It won't change the situation but will help you.
Thankyou for taking the time out to respond i am very grateful. My brother has already said its not the daughter in laws job to look after mum. A few times when i have been in the kitchen cooking she has been quite rude to mum which i cannot bear. My brother seems oblivious to this. She just ignores me and pretends i dont exist. I just cry to myself in the bathroom. Some people have no heart. My sister in law likes to rub my nose in the fact that both her parents are alive and well. My mum is constantly looking for me she gets upset when im not in the same room as her. Thankyou for caring. 🌻
whose house is it- do they all live with you? Seems utterly selfish to not help you out at all, even if not the caring responsibility but say supporting you by helping with the cooking /cleaning etc. Sounds like they are happy to let you get on with it all, shame on your brother!
Thankyou for caring its been a while since anyone was so kind . My dad was always kind and supportive i still miss him even if its coming to 3 years now since he passed away. The house is my mums. My brother used to understand before he got married. But now it seems like he doesnt care at all much like his wife. He has let me down. I will not forgive him. But i will just try to focus all my energy on my mum. Thankyou again for caring. Yes and i agree shame on my brother.🌷
There is something about cleaning up a major soiling disaster that brings one especially low. It seems so endless trying to scrub down all the contamination. Even worse when episodes are frequent. Good job in getting through it and getting her all clean and comfortable again. Isn’t it amazing what we get through without running out of the house screaming.
Thankyou for taking the time out to respond. Yes i dont know how i did it . Ithink everyone who is going through the same things are amazing! You are all amazing!🌻
It's one thing to lose your heart, not easy but we can and do survive. But do not lose your body and soul, which is what may happen if you don't get help caring for your mother. You need time to be her daughter. It's precious time, and I understand how easy it is to lose yourself in caregiving and how hard it can be to get help, but don't give up. Caregiving for a loved one with PSP is absolutely grueling, relentless, and exhausting and it will shatter you. Ask for help. Give yourself permission to have help. Good luck. No one deserves the nightmare of this disease.
Thankyou for responding i am so grateful. 🌷
it’s mad what your going through . I’m sorry but your brother is horrible and his wife also . Why are they there .?? I am the one with CBD and declining rapidly now . My mum passed away 10 days ago . My brother didn’t come to see her before she passed as he didn’t feel the need . When he came for her funeral he got very drunk . Didn’t ask how I was doing ., even tho I wash struggling to walk and talk. .. I’m done now with him ! Throw his stuff on the lawn and changed the locks .. I’d there anyone who can help you at all . Keep on this forum
, the people are fabulous and although we can’t help with every problem we understand.. selfish brothers and all . Keep up the fab work with your mum your a legend xxx love from Belfast ❤️
Thankyou for taking the time to respond i am so grateful for your kind words. I am so sorry to hear about your mum. And i am so sad that you are going through a very tough time. What awful brothers we have! You are right his wife is awful also. Sometimes i think some people dont have a heart. And how selfish these people can be especially when they can see everything day in and day out. You sound like a very strong person. Please continue being strong. I would say that you are the legend! Lots of love and a big hug to you!🌷
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