Hi friends I'm fed up. Mum got up at half 8 in the morning and has been on the toilet for 3hours. I washed and showered her.Then fed her nothing much was eaten. As I lifted her off her chair I heard an explosion in her pants all her poo was like water it went through her bottoms to her night robe. I put her on the toilet and she has been on there for another 3 hours. I again washed her and started to shower her yet again she started pooing on the shower floor. It's literally been all day. I have put her on the toilet yet again. The stupid raised seat keeps moving and is not secure. I've had a bit of respite from my brother and sister in law as they are away for 2 weeks. They are non helpful and my sister in law rolls her eyes and shakes her head at me. At least I don't have to see that. I'm just so fed up I feel like walking out the front door and to keep on walking. Mums communication is virtually non existent she whispers even then alot of the times I don't understand what she is saying. She looks lost. It's been all day and I haven't had a chance for a breather. Just now I've shut the bathroom door and left her to it. It was hard to even get something to eat for myself. I love her so much but it's like she is a stranger. It feels like my mum is long gone. It's just another awful day. Most days it's tough anyway but sometimes it gets even more tougher. I'm so exhausted my back and shoulders are always sore. All of you out there going through the same thing I wish I could give you all a big hug. Sorry once again for the rant.
Feel like running away. : Hi friends I'm... - PSP Association
Feel like running away.
bless your heart! You need help! I understand tho how you feel about walking away, I know I won’t, but I do entertain the thought at moments. Yes everyone caring for someone with these awful illnesses deserves a hug. And the loved ones with this , they are going thru this torment and it’s not there fault. I have to tell myself this all day long , so I don’t lose it. Hugs to you! Try to get a breather any time you can. That’s what I have to do. Take care, ♥️
Thankyou for replying.Just tried to wash and shower mum again but I had to put her on the toilet yet again. It's been all day now. She usually eats at 5 pm but she is still on the toilet. I feel like I've had enough.Looks like l have to leave her on the toilet all night now. This disease is so so so awful.And shame on my siblings for not bothering to help. And shame on my brother and sister in law even though they see my struggles continue to give me pain. But lots of hugs to you Thankyou for taking the time out to reply means alot!
I am new here. I was caring for someone with PSP and ultimately it was not sustainable. They were approved for resthome care. I am in NZ. Is your mother not entitled wherever you are? Your situation seems unsustainable as well. Is there any organisation you can reach out to you to give you help if your Mum is not able to go to a resthome. Best wishes.
Hello there
Please contact your GP/District Nurses ASAP as it might be that your Mum has a bug.
Loss of bowel control is not unusual in PSP but this seems rather extreme. We used to have to cope with extreme constipation or mountains of poo, but nothing like this lasting all day.
Have you thought of placing your Mum in respite care to give you a break? I remember you are here in the UK so has any care package been put in place to help you (CHC) or has the fact that your brother and sister-in-law live with you adversely affected any applications you have made?
You have done so well so far, so keep on keeping on. Take care, hugs
I went through the same with my mom. It was physically and mentally exhausting. Also she would be falling a lot since her mobility was getting worse. The last fall she took I called the ambulance and since then she moved from hospital to rehab to a long term care home facility. It's not easy but please do take care and think of yourself as well or else you will be burned out. I read the signs and made the best decision for her security and well being. Wishing you strength and courage xo
We've all been where you are - exhausted, emotionally and physically drained and just empty. I can only echo what has been said above: please see what avenues you can explore to take a break of some sort. If you fall over, everything falls over too. This disease demands too much from everyone it touches.
Besides that, I would perhaps suggest that you get a doctor in to see your Mum. An entire day on the toilet doesn't sound right, even for this crazy disease. One of the lessons I had to learn was that although PSP dominates everything, our loved ones can still catch other bugs that just make the situation so much worse. Not everything is due to PSP. Hopefully it's a bug or something else that can be sorted out so that your Mum's PSP can return to 'normal levels' (whatever that means!).
Deep breath. Sending you a big hug.
yup you will feel like running away many time as you go through this journey with your mom. You need help. I looked after my husband for 2 years but the multiple trips to the bathroom at night wore me down as my rest was broken and I would be impatient and cranky with him. I did not want to feel that way. I knew it was time to get help. He is now in a care home and I visit and still do some of his personal care. I spend about 6-7 hrs/day with him but able to go home and rest so that makes it easier for me to be there during the day and do what I can for him. I too did not want to feel tired and frustrated everyday and now I can be a loving wife and advocate for him as he too can't talk. You are tired and fatigued get some respite care. You cant do this alone. Take care of yourself too so that you can take care of her.
it’s been a bit since this post. How are you doing?
Hi Thankyou for caring. Hope you are okay. I'm okay Thankyou. I think I'm trying to learn to just go with the flow. I have to remember it's also hard for mum even more so. I have to learn to not be anxious or to panic because it makes mum also get anxious and panic. I just have to give her alot of love that seems to calm her down and in turn calms me down. Some days it is harder than others. But overall love conquers all as they say. Just have to give mum as much love as possible she is my priority. Thank you for taking the time to see how I'm doing. Thank you so much I very much appreciate it. Thank you. 😀🌹
I’m the patient and I know your mom is, too. I’ve learned so much about making things work in difficult times. I’ve loved your pics.
Doesn't feel much pain....
Last stage?
My sister is still "in there"...
