Hi friends just needed a moan. You must all be sick of me by now. As this disease progresses for mum it's getting so much much harder. She is in her own world most of the time. The whole day goes in tending to her and the nights. We had a visit from someone from the hospice who thought maybe an hour out getting my hair done while they send someone to sit with her would be good. First of all I cannot be bothered to get my hair done I'd rather sleep. Secondly they wouldn't understand what mum is trying to say as nothing comes out her mouth now. She is always looking to me for taking her to the toilet etc. She would get extremely anxious and panic if I was not around. I dread everytime she gets her hands out because that's when she wants something which is constant day and night. I have to sleep with her in her bed I don't really sleep because my brain knows any minute now she will need something doing. I feel so awful saying this but I am drained and fed up. I love her so much and know if I was in her position she would do better than me. I can't leave her with anyone else because I know her so well she would decline even more. I feel guilty and awful but I also feel fed up. It's just constant no time for me. I know it's selfish to even think this as she is going through terrible times. I feel like I'm a terrible person because I miss her so much she was my best friend. I love her but not this terrible disease. I hope I get my strength back mentally and physically. Love to all of you brave people out there. 🌹
Fed up and guilty : Hi friends just needed a... - PSP Association
Fed up and guilty
Sorry you're going through this - this is a really difficult time and it's ok to feel frustrated and wanting to run away from it all - i took care of my dad, after quitting a good job and relocating back to my country - i could hire carers but i realized no one else could take care of him like i could - i had a few hours help from my mom too but it was still backbreaking
Please try and get some break if you can - if someone trustworthy can take care of her for a few hours, just go out and get tested, even if it's a short time
Best wishes
Thank you for being so kind and responding. You are so right same as you no one will be able to take care of mum as I can. She relies on me so much and she wouldn't want anyone else. My brother and his wife are living with us. My brother is good for phoning the doctors and taking mum and me to hospital if need be. But I have to do all the work with mum tending to her every need. It is backbreaking and heartbreaking. I feel so exhausted mentally and physically. It's only been over three years I've had not one day of rest. It feels like a lifetime. I go shopping once every two weeks even then I have to rush in case mum needs the toilet. My brother sits with her. I have to keep going till my last breath I promised mum and promised my darling father who passed away suddenly just over three years ago not long after mum was diagnosed .🌹
ohhhhh my , I’m in the same position ….I totally get it !!!! I’m mourning my loved one who’s still here . I’m mourning myself for who I used to be . No time to think straight just like a mouse in a never ending wheel . God Bless you and your mum xxx
Thank you for being so kind to respond. I feel exactly the he same! My whole body is aching every day and my brain has no time to think about anything else other than mums needs. It's like groundhog day but with some awful challenges added in along the way! May we keep strong mentally and physically. 🌹
Its tough, I cared for my Father for 3 weeks. I was so drained nad could not do it, so he is in a resthome. Does your mum not qualify - really sounds like she should be there. Dont let things get to breaking point and find a way to receive help even if your mum has to make some compromises.
Thank you for being so kind in responding. I couldn't put mum in a resthome she would be heartbroken and I would have failed. I will try my best to keep care of mum for as long as my body and mind wills. 🌹
Cinderella - You have not failed, your an amazing human being for doing what your are doing. My father hates it there, but he is safer and better cared for with respect to his personal needs. It really seems from your posts you are mentally and physically exhausted and that can only go on for so long before a breaking point. No one wants to put their parent in a resthome (its a last resort), but you need to look after yourself as well.
Since being able to step back, I visit regularly, take him out in a wheelchair and all the time spent with him is more relaxed and gives his day joy.
Hello there
I'm so sorry to read this.
The trouble is if you burn yourself out you won't be able to care for your Mum and then you will have to hand over to someone else. Please get someone in /a carer/team of carers to help you regularly so that your Mum get used to others helping out. It sounds as though she may be getting to the stage where she may take to her bed and then you WILL NEED at least one other person with you to manage her day to day needs.
I was blessed to have a lovely team of carers who came in to help me. My husband got to know them well and they joked with him and made him chuckle. It helped to provide some light relief to a fairly grim time. They are there for you too, to help lighten the load.
With regard to your earlier post about cataract ops on your Mums eyes, have you discussed this with her eye consultant? It might be kinder not to proceed! My husband had his done before he was wheelchair bound, but because of the PSP his sight deteriorated anyway.
You can get an information pack from the PSP Association to take with you for health professionals. Worth a phone call to them. They can offer all sorts of advice to you.
Keep on keeping on, you are doing so well, but you have to look after yourself too.
Hugs
Anne x
Thank you for being so kind in responding. My mum wouldn't want any strangers to take care of her. Unfortunately I have two sisters but they are selfish and can't be bothered to help. It would have been nice if they could help,mum would of been at ease with them. I have explained to the professionals about mums condition they don't seem interested. I don't think they would bother with a information pack as they are so busy. I'm in two minds about the surgery. Maybe we cancel because it may not be worth the stress for mum to go through. 🌹
So sorry everything is so desperately difficult. PSP eventually hijacks everyone's days and nights once it takes hold of a life. All we can do is keep trying to adjust and figure out how to share the care-giving.
Your Mom may not want anyone she doesn't know to be part of her intimate care, but as Anne has so wisely pointed out, there will come a time when you are absolutely unable to do it all on your own. It is far better to get that help in place now, before you are too burned out. Your Mom may initially be unhappy about someone else other than you assisting her (and you), but as carers we have to be careful about not falling into the emotional trap of so deeply wanting to ease our loved one's condition that we let their fears and reactions dictate their personal care beyond what is reasonable or even physically possible for us. I have been there, as have so many other folks posting here.
I also echo Anne's question about the need to go forward with cataract surgery in the near future. My husband's vision deteriorated very quickly, and considering the effect PSP has on vision, I doubt that removing cataracts would have had any real beneficial effect. I hope you can reassess this decision given the obvious additional stress this is causing you both now.
Big hugs, Purrlie
I completely understand how you feel I was there once too. And when I realized what a impact that it had on me I knew like it or not more help is the only way to make it work. I had a conversation with my loved one that she is being selfish to expect only me to be able to do everything. And that I wasn't going to do it all alone anymore after 3 years. They don't understand how much goes I to their care unfortunately. So you have to make the decision to set your boundaries. If you fall I'll from over exzurting yourself you will be good to nobody. This is why care giver often pass away before the actual person they care for please be careful allowing this to be you. You haven't failed by getting help. One thing we can't do is stop,pause or cure this disease. The deteration will continue no matter what you do unfortunately. Actually loving and doing such a great job will only prolong thier life and allow deteration to continue. I've recently discovered myself I feel guilty for prolonging my loved ones life always thinking outside the box to make things better for her. In reality I've made it worse for her and harder for our team caring for her. Please be kind to yourself this is a wicked disease. Your doing a wonderful job!!
Your stress is exactly why you need to take that time off. She really won’t decline because you take an hour to yourself, even if you take an hour every day, and you should. You don’t control her health even though you’re trying in every way possible.
Easier said than done, I know, but I say this from my own experience taking care of my mother 15 years ago. We enrolled her in hospice in October. I was sure I could extend her life using my “super powers” and by being present but I was wrong.
I was going through my own “dark night of the soul,” selling my business to someone I didn’t like or respect to save my employees’ jobs, turning 50, and I’d lost all idea of what I wanted for me in life. I was lost in the daily cycle of saving everybody but myself.
I was so lost I ran a red light while crying and talking to my brother on the phone about how hard it was — my siblings offered no help so I did it on my own like a good soldier — and was very lucky other drivers were alert enough to avoid me. I went home and cried silently into my chicken soup while I ate with my husband and daughter. They didn’t know what to say or do. So they were there for me silently.
The hospice nurse was blunt with me about taking time. “She’s not going to die soon. Probably not for a couple months. You need to get away from all of this.”
I took four days and flew to the other side of the country on retreat. A company arranged full days of healing activities and I surrendered to their schedule completely. I was in a city I didn’t know but I trusted the process enough to find healthy food and stare for long periods of the day at the mountains nearby. I didn’t try to think about anything back home and they didn’t call me in panic.
When I got back I was strong enough to make it to March, when she died.
Here’s what I suggest you do. Meet the person who will be watching her while you’re out then go to where she is with them and say only this in a matter of fact way: “This is so-and-so. I need to go out for a bit and they’re going to make sure you’re cozy and safe while I’m out. I won’t be gone long. Have a good time you two.” Then turn around and walk away. No need to say where you’re going while you’re out. No need to ask permission. You’ve arranged for her safety and you should trust this person’s training. I volunteered with hospice and was well-trained to handle things.
She won’t die while you’re gone. And after the first couple times you’ll start to appreciate your moments to yourself. Start this week.
Kyle
Thank you for being so kind to respond. I'm so sorry you had to go through alot. My mother is like a child to me now. She is always looking for me night and day. I go food shopping once every two weeks while my brother sits with her for a few hours. She has a routine so I have to work around that. Shopping for food is just a rush. Because as soon as put everything away it's her toilet time or dinner time. My brother offered to sit with her but he can't take her to the toilet or prepare her food and Feed her. But still I'm so grateful I can do a bit of shopping while he is with her. Thank you again for being so kind. 🌹
Reading your posts and comments this is exactly how my dad with PSP is with my mum. He only wants her for everything, I come over to help daily but it’s only mum he wants. Despite being told by everyone ‘dad should be in a home’ Mum doesn’t want him to go into a care home either and we have no carers in place (but that is not out of choice it’s the healthcare system letting us down). Dad panics when she is even in the kitchen so going out is a no go for mum. I can relate to how you feel and wanting to do the best. You are a warrior like my mum and I wish you all the strength to continue what you are doing. Like your siblings, my siblings don’t want to help and that makes it hard - just having a little help can make a whole difference. People just don’t get PSP and they don’t want to know but we all know how this disease is and the challenges that come with it. Sending you lots of hugs x
Thank you for being so kind to respond. We only understand how it feels caring for someone with PSP. We love them so much but it's so exhausting. It's a shame our siblings don't bother to help. Shame on them. You are right people don't get PSP. Even a bit of understanding can make a while lot of difference. My brother and his wife live in the same house. She keeps away. She doesn't even bother with the housework. My brother just watches me caring for mum 24/7 and taking care of the housework yet they are happy to let me get on with everything. Your mum is truly a warrior. It's love that drives us forward. The challenges from one day to another are immense. All we can do is our best and to keep on being strong! Love and hugs to you and your brave mum. 🌹
The siblings situation sounds very similar to ours. Are you based in the UK? We are currently trying to get support via the NHS continuing healthcare.
Please don’t under estimate how calming a hospice can be and how comfortable your mum will feel being there. This is what we experienced and my mum gets very distressed in unfamiliar surroundings. My mum goes there for respite care and my dad gets a week to look after himself. It has been the best thing for our family. If you don’t care for yourself also and you don’t have the support of other family members then you will find yourself in a worse situation as you will be physically and mentally unable to care for your mum. You are human, not super human. Your mum will be incredibly proud of you and feel the love even if she can’t express it. She would want you to think about you too. We are lucky as a family as we all support one another and give each other strength. It sounds like you don’t have this which I can’t imagine but please take up on the help and support that’s out there. Your mum will not want you to miss out on life for yourself.
You are a rockstar and a hero for taking on this 24/7 commitment! Of course you’re drained and exhausted! Don’t apologize for feeling what you feel! I was in a nearly identical situation with my husband for 3 1/2 years until he passed 4 weeks ago. I understand the poor sleep because she might make a sound to indicate she needs something in the middle of the night. You almost feel like you’re sleeping with one eye open.
I would wait until my darling had to use the bathroom then have my sister stay with him while I got out of the house. Maybe a trip to the grocery store or just a drive to have a moment that I wasn’t being needed! Even slip away for a much needed and deserved nap. (My sister moved in with us to help out.)
Soon enough your time will be your own again🙏 Bless you for walking this journey with and for her. It takes an extraordinary person to do what you’re doing and we see and hear you.
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