I am looking to chat with other children taking care of your parents in your home.
Eric and I are in our 30's (well I'm almost:)) and we are caring for his dad in our home. He had a sudden onset of the PSP buy by my gauge hes about 5 years into the disease compared to others....
Others out there able to relate???
Hi, my Dad was diagnosed three years ago but is now at the stage where he can't walk or do anything for himself, he also has severe dementia like symptoms. Three years ago he was still working! He doesn't live with me, but lives very close by with my mum. I'm an only child. Me and my mum wanted Dad always cared for at home rather than in a nursing home, and fortunately because of my wonderful mum, we have been able to do that so far. I have been there doing all those things that any father would hate their daughter to do...washing, dressing, feeding, and have witnessed the awful cognitive decline which brings about it's own challenges, now fortunately we have full time carers to assist my mum. I am 30 also. When he was diagnosed he rapidly got worse and it his me and my mum like a ton of bricks, we took time to process what was happening. At that time, I was so upset that he wouldn't be able to walk me down the aisle or play with his grandchildren, but such is life. Every week there seems to be a new battle about something to do with his medical conditions to fight his corner...but that's what we do for our parents! X
Thank you for sharing! My father in law is 72 and was COMPLETELY independent less than 6 months ago. After his stroke in Feb is now not able to do anything for himself. He can't walk and that is only getting worse, I have to help him with all the day to day activities. We are blessed to have an Adult Day Care service in the city where I work, so he goes there during the day while I am at work. Right now he is able to get in and out of my car, he will continue to go until he cant get in and out. He needs 24/7 care and we are saving dollars by doing it all ourselves and both working full time.
Hey both, I'm 35 and my mum is around 4/5 years inti her PSP we estimate. I was living in Australia but when mum got the diagnosis then had a fall, fracturing vertebrae I made the decision to come home. I now live in a housing association property provided for my mum and am her carer. I find it very difficult having relinquished my life and freedom to be in the house all the time and i feel like a carer rather than a daughter most of the time. It's so sad and strange having to do things for your mum that she used to do for you as a child. Being a carer is such a tiring and frustrating role, especially with complex conditions like PSP. I am currently the sole carer for my mum (despite having 3 siblings) and thankfully have a helper that comes in to do the night shift 3/4 nights a week. But after a year I feel this is unsustainable and more my sanity and to restore some daughter/mother balance Ive asked for more home help so I can go back to doing nice things with mum rather than spending all my time and energy on things like meds, symptom management, catheterisation etc.
it would be good to talk to children who help care for their parents as I find a lot of people on the forum are partners and so married and the same age etc so have a different perspective. I miss having some semblance of a social life or going to the gym or travelling. But you have to do the right thing by your parents xx
I feel for you! We now have "2 children".... I hate to sit in the house as Eric and I are soo active and have a 6 year old daughter. We are full time care givers and parents. Its not only hard to be a child or the individual you are caring for but yet be a spouse and a mother. We try to get outside as much as possible. We have a ATV side by side and its a blessing, we take my father in law in that as much as possible. We live out in the country so we are able to drive it around. He enjoys it but has to be awake enough to get up and in it.
Yeah it must be difficult having a family to care for too and working. I can't work unfortunately as mum needs 24/7 care also but I'm also not entitled to any govt help so that's hard. I push mum in her chair around the nature reserve when I have the energy too but I can't do any of my own outdoor activities anymore like running. Having two adults helping is at least something, do you have family also? I've recently asked for more help from the carers services and am awaiting an assessment result as its been a year and I can't do it all myself for much longer. It's sad but I need some quality of life also and want to be a daughter that cares not a carer that's a daughter
Terry has 5 children and a HUGE family... but not one wants to step in without a pay check. Its sad. We/He is not eligible for any government help either. We have some local CNA's that are available when we need to get a few things done which is nice but money quickly runs out. Thankfully he is able to go to Adult Day care which allows us both to work. They are great there and most days he enjoys himself. We have only been caring for him like this for about 11 weeks but it seems much longer. I cant emotionally put him into a home nor do we have the money. We are in IL and there doesn't seem to be much assistance for people in our situation.
Ah ok so you guys are in the states. I don't know how it works over there but here because mum has no money or assets she gets a care budget to help. I can understand not wanting terry to go into a home, I feel the same about mum. That's why I moved back, but I thought I'd get more family support. I have 3 siblings but none help, despite my sister leaving ten minutes away and working part time! Sadly you really find out who your real friends and family are. It is a very difficult situation for everyone. We are lucky in the UK to have a PSP support group with meetings every month or two and this forum is invaluable. The PSP org in the U.S. Seems like a good resource too but no help with finding seems bad. Is there no disability benefits or social help or care? Adult day centre sounds good though, mum goes to a lunch club for 3 hours twice a week but that's about it. I can imagine it does feel like much longer than 11 weeks, carer is the most demanding and exhausting role I've ever had. If there is anything I can help with then please don't hesitate to ask, we are two years into mums diagnosis and I've read and tried that many different things to help with management and symptoms I could write a book!! Just try and remember what a great thing you are doing and although appreciation isn't always forthcoming (it isn't with my mum anyway) they do really appreciate all your sacrifices xx
Nursing/Care Home
Nursing home
Home from home...
Home sweet home
Support & care at home v nursing home
