I’m sorry to write this but I know this is the only place anyone will understand. My dad has suffered such a steep decline in his health in the last few weeks- he’s been discharged from hospital today after 5 days- there was nothing they could do for him. They originally suspected his delusions and sudden decline in health was due to an infection, but it wasn’t. After this was ascertained, it seemed they just wanted rid of him and released him without informing me (despite me asking- so I could be there) and assessing if he can live unsupported- as he has been until now. He even had two bad falls in hospital- banging his head. No one cares. He is barely mobile and is delusional all the time. Thinking his dad was in hospital with him (he died in 1986) and that his mum was still alive etc. He barely makes any sense when I talk to him now. When I went around I had to nearly carry him to the toilet (he’s lost so much weight recently- he’s so frail) help him in there and then help him dress. His inhibitions are completely gone over night and it’s just so different to the man that used to be my dad. I just feel so overwhelmed and shocked how quickly this disease has been taking over him. I want to help him more but I don’t drive and I have a young toddler. I am the only person he has. I feel such a failure and all I do is worry. My heart is breaking and I don’t know what to do. I fear he needs residential care but I’m unsure. Social services completed a care assessment a few months ago and said he didn’t require care (which he really did even then!) I’ve arranged some private care twice a day but it’s really not enough. I don’t even know what I’m asking- or if I’m asking anything?!
I feel heartbroken: I’m sorry to write this... - PSP Association
I feel heartbroken
I am VERY sorry.
I live in Los Angeles, CA, USA.
I lost my son at the age of barely 55 years of age to PSP, May 4, 2017.
Against others advice that Social Security could do nothing to help. I applied to Social Security for him. He was already receiving Cal STRS disability (his day job was as math school teacher with LAUSD), but very little. He qualified. PSP is listed as .........with S.S. I wish I had done it sooner as his first check arrived shortly after his death.
If you live in the USA apply for your dad. This PSP robs you of everything...including your last penny. The money that I hope he will receive will help you to hire in home care to help you.
Good luck....and prayers.
You are in an awful spot. You can only do what you can do.
The declines can be swift.
I think you need to get social services back in as soon as possible, call your doctor and get him to speed this up, it is disgraceful they let your dad out of hospital without informing you, I bet you was very upset with them. It sounds like your dad can’t look after himself, it is dangerous for him not to have the care they should be giving him, phone up the social worker in the morning, cry shout do what you have to do but get them there as soon as possible. Just can’t believe how they are treating you all as a family, your dad definitely need a care package, hospital should of made sure that was in place before they let him come home. Also to falls in the hospital is very bad, and they did nothing? You also need to have peace of mind that your dad is safe. Sending you a big hug seems like you need it. Yvonne xxxxx
Hello, my dad also declined very quickly and it is hard to see the dad you knew disappear but stay strong and rant when u need to. Contact Adult Social Services again and ask for a reassessment and call your dads GP who can hopefully refer him to community services that will also refer to Adult Social Services, don’t let them tell you what he needs you tell them it is hard to juggle your life with your dads needs so make sure u look after yourself.
My darling girl you have to fight for everything...i did and won. I get full support for care round the clock. Get on phone to GP and district nurses you need a continuing care assessment speak to no-one but head of social services for an immediate transfer to nursing /care home. I am a nurse i know what im talking about. Ring and ring again . Where do you live? Uk.....if so do it today threaten them that you will report to QCC. It is so bad that he has no support.
Im here if you need me
So sorry that you are going through this. As Yvonne says, get social services back in immediately. Legally you are due a carers assessment, and he is a vulnerable person. Also, if you are in the UK you should have a Community Hub during this lockdown period. The site address for ours is westsussex.gov.uk/Covid19co.... So try your council name in the same format. They say they’re for vulnerable people so shout as loud as possible to as many people you can to get him the support needed. Sending love and huge hugs. Xx
You are certainly not a failure, you are a very caring daughter trying to deal with a system that’s hasn’t grasped the severity of your dad’s illness and appears to be letting him down.
First port of call today is your dad’s GP. Explain to him that despite 2 falls in hospital your dad was discharged to care for himself. Make it absolutely clear about his rapid decline and that he needs to be referred back to a social worker for another assessment right away; I say start with your GP because getting through to social workers can be difficult especially at the moment with all these services under extra pressure. I think you are going to really have to dig your heels in.
I find it absolutely bizarre that your dad was discharged from hospital knowing he’d had 2 falls whilst there. Normally that would be a red flag to having someone come to the house to check that you can either live independently or whether you require help.
Sadly, decline can be very rapid as happened with my husband.
Make those calls right away.
Hils
x
Dear Kellsbelles, I am assuming you are in the UK. I am sorry for you having to cope with this in these uncertain times. There are legal issues that need addressing. Are you your Dad's next of kin? Do you have his Power of Attorney for Finance and Health and Welfare. If you do then you can effectively talk for and represent his interests. The most immediate issue is his health and wellbeing. He should have been given a hospital discharge note. The hospital should have had a multi disciplinary meeting (NHS and Social Services)and he should not have been discharged without a care package being put in place. I suspect that Covid 19 is being used as an attempt to clear out patients and this procedure may have been short cut. It has been my experience that you have to scream and shout and you must find out who really is responsible for him. In the first instance his GP needs to mobilise the District Nursing team. I was fortunate in that the GP, District Matron and the local Hospicecare Sister took charge of my wife's case and were very helpful in the 2 years I was able to keep her with me at home where she died. They arranged various assessments and equipment needed to protect her. It was a long haul and I have never worked so hard but it was a massive privilege. I am happy to offer any further advice that I can. Kind regards Rob
I am sorry but I don’t know where you are in the world. Let us know, then the right people can give advise. All I do know is, where ever you are, nobody knows anything about PSP or seems to care, ( in my opinion). You have to fight for everything. So I’m afraid, it’s put your boxing gloves on and go to work. Don’t take no for answer, don’t be afraid of using tears, they are a powerful tool. For too many years I held back, not letting anyone see me cry, in the end, there was no other option, I couldn’t stop. Funnily enough, that when I started to get some of the help I needed!
Unfortunately, we all do know exactly how you are feeling, one thing you are NOT is a failure. Unless of course, you are one of those fortunate people that has a degree in PSP and know all the ins and outs of caring for someone with this evil disease. Even then, I doubt if you would sail through. It is an impossible task. All you can do is your best, under the circumstances you are faced with. Nobody can do this alone, get on the phone NOW and scream HELP to anyone that will listen.
Keep posting, we will all try to help, at least we will listen and be a big shoulder for you to rant and rave to.
Sending big hug and much love
Lots of love
Anne
There is some excellent advice being offered by the seasoned veterans on this forum - take it and use what you can. PSP can literally change your loved one overnight and so should you... in response to it. You are your dad's great advocate, don't assume others will do this job. Abandon the pleasantries if need be. Pick up the phone, write to your local MP or council, the point being... make yourself heard. The squeaky wheel is usually the first to get the oil.
Tim
So feel for you Kellsbelles, it's non-stop trying to explain to some people in hospital and social services when you don't feel they're properly listening and when it's not in your nature to keep challenging professionals. You're not a failure at all and doing what you can. Seek the excellent advice offered by others here. Can you appeal the social service's assessment
You might also want to speak to PSPA if you're UK based as they may be to also explain the different options now available for your dad.
Consider also speaking to your GP so that they also know you're a carer and where you might get some help.
Deep breath and good luck!
Thank you everyone- I have read all your responses and I’m going to fight this out for my dad definitely. I’m in the U.K. I’m now his POA- both financial and health. I’ve called his doctor three times today and still haven’t had a call back off a doctor. I am waiting on social services again. The last lady I spoke to said she would call me back but didn’t. The care company I’m using have been so fabulous. The manager there is helping me try and sort dad out and she’s also been trying to contact people for me. She says he can’t be left alone anymore and has told me about something called CHC. I’m going to have to try and find a suitable nursing home I think- nearer to me so I can visit him. I know he will hate it but to have live in care it would cost £1500 per week. Currently he’s having emergency carers staying with him on overnights but that’s £500 a day!! My dad has a small amount of savings but they won’t last him long- I feel his saving are another reason why people aren’t helping too (could be wrong)but in the grand scheme of things they will disappear fast. My head is just a scramble. I am feeling so depressed with it all and I’m not sleeping. My husband is working away now too. I am so bad at being organised as I’m such a shy and suffer badly with anxiety. I wish I had those skills right now. I’m trying my best.
Hi kellbelles
Sorry for all your going through
Make sure you ring pals as they shouldn’t of let him home without checking about Homecare and they and should of involved social services etc
Get the doctor involved and tell them don’t ask that you need help with your dad
Get in touch with adult social care too and ring the CHC and tell them what’s going off
This all brings back memories for when I had to go through all this for my partner and I was like a dog with a bone never let go till I got what I wanted
All the best and hope you get some good results from them
Take care
Sue x
Hi. It is quite natural to feel anxious and you can only do your best. You have been given some very sound advice which will hopefully come to fruition for you before too long. There is quite a lot of info on CHC on the sight. Kevin has been a great help to many dealing with it as it is not an easy process. I think finding a nursing home near you is a very sensible idea. I am sure that being able to see you more often will make the move more bearable for him. In the meantime just keep using the phone for GP and Social Services and keep a record of when you phone so you can quote it when and if you have to phone again. I am glad that the care company are being helpful. As it appears that your Dad should not really have been discharged home as he was it might well be worth getting in touch with PALs at the hospital he was discharged from (Patient Advisory Liaison Service). They have many contacts and will listen. Good luck with it all. Big hug AliBee x
You are in a very difficult position. I really feel for you. With a young child to take care of and a job as well as your father, you have your hands full. I think the advice to talk with your GP immediately is good counsel. About two years ago I had a similar experience when my husband was hospitalized for flu, since his illness and stiff posture made it difficult to breathe and cough. I could tell the hospital staff - the neurologists who made rounds-- just wanted to get rid of him and have him out the door. Two things helped that day - called his GP and asked to have a nursing and social work team meet with us to plan his post-discharge care and the equipment we'd need delivered to our home. Also requested a meeting of the attending neurologist and the resident neurologists and gave them a fifteen minute seminar on CBD and the opportunity they had missed to learn more about a rare condition and about the role of palliative care and family support in medical outcomes. Felt like Anna in The King and I after she told off the king and turned and said, "Oh, that felt good, your Majesty!" You do have to be an aggressive advocate for your patient, and that may be hard for you. Just know that it isn't a bad thing - it is the best thing for your father. Are you in the United States and is your father a veteran? After husband left the hospital, we made contact with the Veterans' Medical Center locally and they have been nothing short of fantastic in taking care of my husband and supporting the care I give him at home.
PS Be sure to find some time each day to just decompress and let the good things in life -- music, nature, laughter, whatever it is-- fill you with the energy you need to live.
Marilyn
One last piece of advice no matter where you are. Just keep calling anyone you think might help. Don't be afraid to sound as desperate as you feel. It took me about a week to get someone to finally really listen to me, but then I got some help.
Sometimes declines can be very fast, but then there is usually a plateau for awhile which will give you a little time to catch your breath. It sounds like you are doing all the right things so just hang in there. Help will come if you just keep trying.
Pat
Can so totally understand how you feel, trying to deal with the services that are meant to help us can turn into a full time job in itself sometimes. Keep trying the GP & Social Services, do not give up, you & your Dad need help and that is what they are there for. Try the District Nurses. Do you have contact with an OT, Physio, any other health worker, see if you can get hold of them, they maybe able to help getting Social Services to respond.
The hospital has failed in it's duty of care in discharging him back to his home without support. Make notes of what has happened & when & when things are a little more settled make a formal complaint to the hospital (these things need to be addressed or they will happen again).
So glad to hear the Care Agency are being supportive. When you get a good agency they are the salt of the earth.
Hope you can get some proper help very very soon.
A
You've had lots of useful advice but you made a small point that's quite important. If he has enough money at the moment to fund care then my experience is that it is much better to just get on and organise what you think is needed. When mum could no longer cope in a flat on her own I organised for her to get into a care home very quickly under a respite arrangement. From there we chose a permanent nursing home. With the level of care he needs and the delusions, bringing in carers is really difficult because you're not able to step in at a moment's notice when the carers don't come or he falls 2 minutes after the carers have left (which mum did). You don't need a GP or social worker to get a self-funded place in a home. There is of course the longer term problem of then selling the house to fund the rest of the care which for me has completely stalled with COVID but there are bridging arrangements through local council. Just don't feel guilty!
Dear Kellsbelles, You say you don't know what you are asking of if you are asking anything. My reading of it, it is a shout for help and I am not surprised given the most difficult and trying circumstances you find yourself in and all because our medical professions do not fully understand the illness nor the impact it has on carers and families.
You have been given lots of advice so I won't duplicate it except to say if you search this site for CHC you will find Kevin's posts and he gives lots of good advice in completing the forms plus posts from others and their experience of it.
With regard to your dad's savings and if he goes into a care home, as far as I am aware, a resident is entitled to retain £13500.
I will be thinking of you and send lots of love and a big hug ( ) Nanny857xx
What a truly difficult situation you are in - some brilliant advice already which I won’t repeat.
Do look on the PSP Association website for information on how to get help (UK) it has lots of easily accessible information. I found their CHC guidance really helpful in the application process. There is also a Helpline you can call/email which you may find useful.
Keep in touch and ask away - any questions you have - we are here for you. But please be kind to yourself you have a lot to juggle.
Love Tippy
Hi Kellsbelles, it's me again, obtaining CHC funding is well worth the effort not just for financial reasons. When you begin the application process you raise your fathers profile. It is another thing that should have been done before his discharge. I am assuming he has had a diagnosis of PSP which is on his record. CHC funding is not awarded for a particular diagnosis but is awarded on Medical need should symptoms and his condition meet certain criteria. It is NOT means tested. You need a medical professional (in my case it was the District Matron) to help you fill in the forms because they know the style and what carries weight. Equally your local Hospice care team leader may be able to help. The level of support you get from CHC funding will change as your dad's condition changes and after being awarded it will need reviewing. If his starting point is that he can do nothing or very little for himself then you should investigate the Fast Track process.
Thank you everyone so much. You have been so much help and given me reassurance. We are awaking assessing for CHC. My dad has declined a bit further and the company I have to look after him for live in care are saying they can’t look after him on that basis- as he wakes so much in the night and tries to get out of bed but just falls. He’s also had a number of accidents which they then have to clean up. They’ve placed him on 24/7 care instead, when someone is awake all night to tend to him- which is £500 a day. It’s so expensive so we are desperately trying to find an alternative / home etc. As soon as I can speak to his doctor (who we have been chasing for four days now) we will ask for a referral to a local hospice as I know they can provide help and assistance- which I didn’t realise.
I am so sorry that you are dealing with all of this, and do I hope you are able to secure local hospice and get the help you need. So much to process on this journey .... I get it. xo Kim
I know. It’s all such a shock and even more so because I’m having to organise it and I can’t organise myself out of a paper bag! Hoping things can settle a bit soon. I’m so glad I have this site- everyone on here are such inspirations to me- dealing with this awful disease / helping someone else deal with it. xxx
It is overwhelming, and you just have to take things one step at a time. So much to learn, all while life continues to move forward in all areas --- this site has been a 'go to' for me this past couple of years. Something comes up, and if I don't know much about how to handle it ... Im on here looking, or reaching out to my forum friends!
Where do you live?
x
Kim
I know. I feel because of his rapid deterioration, i’m scrabbling a bit to get the upper hand again! Not that anyone has the upper hand with PSP 😢 Especially hard with a demanding 15 month old that doesn’t like to sleep! I’m in the UK- near Liverpool xx
I was in a similar position a few years ago. No diagnosis but obvious decline. I had a six month old baby and a three year old. It is hard but you have had some really good advice from people that have been in your shoes. Keep phoning Social Services - I was very lucky to be put in touch with a social worker who only dealt with the elderly. She managed to find my dad a wonderful care home who looked after him until his death. PSP is a horrible disease and unfortunately even GPs do not have much experience in dealing with it. I hope that you will find help sooner rather than later but I am sure that you will. You are doing a great job, you might not think it now but you are. You are supporting your father when he needs you most. This time is horrible for you and you might be thinking that it is never ending. I hope and pray that you get the help that you and your father deserve.
Thank you. That means a lot! I can’t imagine what it would have been like with two children. My son is hard enough work! I feel like I’ve spoken to about 100 different people over the last week alone. I feel that we might make some progress this week hopefully. One person I spoke to from social services apparently wrote notes stating that i was more concerned with the cost (told to me by another lady from social services who is trying to help us) which really upset me. I just don’t want to waste £500 a day on a care company in over their heads- when it could go towards proper care tailored to his needs. I don’t know how long he has left after all and his needs are only going to get more complex. I feel like dealing with people who have no knowledge of this condition is a battle in itself! Sorry to ramble! Did your dad understand when you put him in a home? My dad is quite delusional and out of it but can be quite lucid and I’m scared he will hate me. Thank you x
He did understand - my dad was mentally perfect until his death. That was a blessing. He didn't want to go to the care home but after three stays in hospital and respite for a month in a home that he disliked (quite rightly) as it did not meet his needs he knew he had to. I live three hundred yards away from his house and every time he dropped his glasses or needed help he would phone me. I was up and down the road constantly and that was even with visiting him properly every day (staying for two to three hours). I was lucky that I have two sisters but they both worked and lived 45 and 55 miles away. One sister came home every weekend and took the pressure off of me. She stayed at least one night with him.
Our wonderful social worker Clare explained to dad that things couldn't continue at home as I was struggling with my baby and having to look after him. The final straw was when he found he could no longer walk to the toilet. He had a colostomy bag that required emptying during the night (when I couldn't be there) and during the day. By this time I had taken over the care of the colostomy bag changing as he longer had the movement in his hands to attach a new stoma bag.
We persuaded him to try the new home, it had a very good reputation and was only 6 miles away from where we lived. He agreed as he couldn't see a way of managing his colostomy at home any longer. It was the inability to walk that made him accept the idea of the care home.
They took great care of my dad and as he was one of the few residents who did not have dementia he found himself to be very popular with the staff. I often found the carers sitting chatting to him even after their shifts had finished. I would never have thought it but the care home actually gave him a new lease of life. He had been practically housebound for the previous months and suddenly he was surrounded by friendly people who were genuinely interested in him.
He made a very big impact on a few of the carers at the home, one girl contacted my sister two years after his death to tell us of her new career in marketing. She said that dad had inspired her to try something new and have confidence in herself. They had spent hours together, talking about her skills and what she could do.
It is such a hard topic to raise with your dad but if you had a social worker, nurse or health worker with you then it might be easier. I know that having Clare explain things to dad really helped me. She described all the benefits of the home and how it would be easier for him and for me.
I wish you all the best in the next few days and weeks. Stay strong.
Ahhh I suppose it’s equally a blessing and a curse being so aware 😔 I’m glad that he was on board with the decision to move into a home eventually- and it enriched his final years so much. Your social worker sounds like an angel! I wish I had someone like that! I would like the thought of my dad responding well to the social implications of a home but even when people visit now, him he just sits there staring at the TV (that he can no longer see very well) His understanding of things is very limited also- so having a serious chat about stuff like that feels impossible. I spoke to his neurologist before about his declining symptoms and increased and constant delusions and he thinks that he has Lewy body dementia also. Not the best news. I can’t really find much on people that have both PSP and LBD so I’m a bit stuck.
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I have been dreading the day that I would post this message.
