Hi, I have just joined. I'm not sure of the point of this post, but here goes...
My mum was diagnosed with PSP in July 2020, after having symptoms for about 4 years. She's 69. My darling fit and healthy Dad died of covid on the first day of lockdown, 23rd March 2020, which led my mum to rapidly detoriate and get diagnosed.
Mum moved in with us last year, after trying to live alone in supported accommodation and it not being right for her or us. So she now lives with me, my husband and my two daughters who are 5 and 2. We have had work done to the house so she has a ground floor bedroom and accessible wet room. We have carers morning and night to help with dressing and undressing. I do everything else myself. Mum cannot do anything independently anymore, she is in a wheelchair out of the house and needs support to walk anywhere indoors. I take her to the toilet and clean/wipe her, supervise all meals (choking is an issue) etc. My brother and sister help a good amount, including having her to stay when I need a break.
I am struggling with my own grief, not only at losing my Dad so young (I was 32 when he died) but also losing my mum more each day. I feel guilty all the time, not only that I get irritable with mum but also that my girls are missing out on my time. My husband has to carry so much. I am so scared of the future, and what's going to happen. And it makes me so sad and angry, this disease is so cruel, its robbed my lively active mum of almost everything she enjoyed. And she is facing it all without her husband by her side. And I still need my parents, my kids need their grandparents and I feel like it's all been snatched away. My life is unrecognisable from the life I led prior to 2020. Up until my dad died, he and my mum were my main support, main childcare and we were so close.
I am trying my best but I just don't know how I am going to cope with what we have to face in the coming months and, if we are lucky, years. And then what comes after.
Are there any other children of those with PSP living with them?
Thank you if you read this far, and sorry for the vent. I think I just needed to get it out.
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DaughterCare
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Hi.Such a sad post but so glad that you took the courage to write because you will meet other people caring for parents all across the globe and they will undertsand where you are coming from without you even having to explain. This is a site that no one wants to be on but it will give you a wonderful 'family' of support. Please try not to feel guilty because you are only human. Try to 'walk away' for a few seconds when you feel irritable with your Mum, it will help. Big hug AliBee x
Hi, so sorry to hear that you too are on this awful journey, my dad (75) was diagnosed with psp last year after an operation accelerated his symptoms so much that he went from fully functioning (albeit with worsening symptoms), to needing 2 carers 24/7, so we had no choice but to find a nursing home for him. My children are teens so I don’t have the added pressure that you have of having young children in addition to caring for your mum, it must be incredibly difficult. I hope you get some comfort from knowing that you are not alone and this forum is great for connecting with others in the same boat. Sending big hugs xx
Hi Ali, thanks for your very helpful post. I was diagnosed PSP 3.3 yrs ago, and now at almost 80 I am being offered aTURP (for prostate probs) and separately a new knee (arthritic degeneration). They are not too concerned about the PSP ( it's advancing, but only very slowly,) but I hesitate because of possible quicker degeneration - just like you speak of!I am currently quite active and loving normally - with partner. Was ur dad going downhill fast or slow .... before the op. My gut feeling is to stay clear of the 'knife', but make use of improvements as they are offered. any suggestions? Best wishes Timbowpsp
Hi Tim, so sorry to hear that you too are dealing with a PSP diagnosis, it is truly awful but please remember that you are not alone in facing this. My Dad was quite complicated as he had a brain tumour which was being monitored and was not causing any great problems. During lockdown, my mum noticed symptoms such as falling, mild confusion, problems with spatial awareness, mis judging amounts of food when eating and some continence problems. Following discussions with gp, brain surgeon and neurologist it was decided to operate on the tumour as they all felt the symptoms were due to the tumour. However, following surgery they had problems bringing dad around from the anaesthetic and then his recovery after this was inexplicably slow. After 3 months, he was diagnosed with Parkinson’s and then shortly after psp. We have heard of others with psp who have worsened after surgery to varying degrees although we will never know how much the brain surgery affected Dad. I think it is really important to take advice from a neurologist/ neuro surgeon about the possible effects of anaesthetic on psp rather than from a surgeon operating on a knee problem for instance. If you want any more information on our experiences, I am more than happy to have a chat, best wishes and big hugs, Ali xx
Ali, What a lovely reply to get - so a big thank you! When first diagnosed I was in total shock. Then put together an Action plan: Therapies, Diet, Targeted exercise, and Supplements. And wrote about my journey so far, to give others some guide posts and useful info . It's 3 A4 pages. Happy to send u a copy if you tell me your e-address, but too bulky to spatter all over here! So far its not 'awful' for me, and I keep living in hope and trying alternatives. Stumbling yes, but not yet falling except once or twice. A year ago a stick was 'just in case', now it's needed often, and walking is getting more laborious. Remember PSP stands for 'Please stay Positive'! Typing this takes too long for a speedy Aries, so a 'chat' wd be great some day. Happy to give my number, but is there a private channel or similar? Aren't hugs great again? ..... and no more need now to be furtive! TIM 👍
Hi Daughtercare, your description brings it all back, looking after my wife (PSP). Being in the UK there are resources to help you. 2 carers 4 x a day is what you should be getting. I take it you have an appointed social worker, the key to accessing assistance such as an Occupational Therapist to assess needs. Pleased you are on one level with wet room. We installed one with a Closomat toilet which washed and dried my wife with some checking after which was easier than seeing to everything. I know what you are having to face and you are greatly in my thoughts. If you have not already done so please contact the PSP Association help line 0300 011 0122 or helpline@pspassociation.org.uk They have details of services available in your area including support groups. They were a great help to me looking after my wife with no family near. I am in Scotland where we have Crossroads (charity) - volunteers who came in and sat with my wife to let me off for a few hours. 🙏
I have thought a few times before responding to your post. I am so sorry you find yourself in this awful position. I struggle to look after my husband, and I only have myself to consider. But as a mum of 3 grown up children with small children of their own, I would not want you to put yourself through this, and I'm sure your lovely Mum wouldn't want you to be putting your health and your relationships with your husband and children at risk. This disease is unforgiving and the situation will only get worse. My advice to you is to have a full and open discussion with your Mum (whilst she is still able to have her say) and the whole family and start looking into residential nursing care for her. It would never be the first choice, but at least you would know that she is safe and her needs are being met, and you can enjoy spending quality time with her as well as continuing to live your own life with your family. You will feel guilty, but you are already, and you have to look to the future. And maybe seek some help for your own wellbeing - you are grieving for the loss of both of your parents. My thoughts are with you.
I am so sorry for the loss of your father, and the loss of your mother's capabilities. I am taking care of my 83 year old widowed mom in my home (with caregiver support) and there are other daughters on this site in the same situation. However, I am in my 50s, not currently working, and my kids are out of the house. You have a lot more to deal with. I agree with Rustington, discuss your mother's thoughts and wishes while she can still speak. It is helpful having some sense of direction. My mother stated no feeding tube, no IV antibiotics, or resuscitation; and that she specifically did not want to die at home--which means that she would be willing to be somewhere else.
I thought I could do this for 2 years and that she wouldn't last that long, but we are beyond that. Things are still manageable. The caregivers are experienced and can handle her situation. I have sort of decided on some criteria for moving her to a care home--those are individual, but you should consider what your personal limits might be. For example, I think if my mother were less aware and didn't seem to notice where she was (ie was semi-conscious), or if she could not bear weight on her legs to help transfer at all, or if she were seriously bedbound, or if she was expected to die within weeks, or if for some reason I couldn't manage anymore, I might move her then. In your case, if your kids or husband aren't doing well and need more attention from you, that would be another thing.
If you start looking at facilities now, and realize that there are acceptable alternatives, it might actually help you carry on for longer with her at home, feeling less trapped. Do make use of your siblings to share the responsibilities regularly, as even an hour to yourself is precious, and they would also benefit from the experience and time with her.
Caregiving is very hard on your body. You have to structure your day to include self-care, including exercise, and eating well. When I am taking care of my mom by myself, I can feel my own health deteriorating by the day. What makes it hard is not knowing how long this might go on for, and, at my age, feeling like I might be running out of time to live my own life.
Wow, so many similarities apart from our ages, I'm 50 and my 2 daughters are in their 20's. My father past away in Oct 2019 so thankfully missed covid but Mum's condition deteriorated (diagnosed 2015 and sounds at a similar stage to yours) and after a fall in March 2021 where she broke her sacrum, she came home from hospital to our house. We have her previous carers, that are brilliant, 3 times a day as I am still working full time from home. I also have the same feelings as you and feel like my life is on hold, cannot exercise or get to the gym, walk my dogs for long walks like I used to, go shopping or have any time to myself along with feeling the guilt of no time with my girls, husband or friends or even quality time with Mum. I try to do something nice at weekends but now she doesn't want to do anything involving eating or drinking so avoiding our nice coffee chats at the local cafe. It really is hard. I am thankful of the support that we have from her palliative care consultant and social workers but I too don't know how long I can go on. I have promised her that she won't go into a home though but not having one minute to yourself from walking up to going to bed and then night time interruptions is really hard going. Having little ones would be near on impossible. Please try to get more help and take up every opportunity, even just to get to the park. Don't ever feel guilty and vent on this site whenever you feel the need. This really is the most awful, cruel illness to anyone but it breaks my heart that it's robbed my lovely mum of her life as she is now a shadow of her former self. Please take care xx
You are not alone, we carers all have days when you grieve for what might have been. My vibrant, active, clever , practical wife is disappearing before my eyes. However the mischievous, funny, irreverent wife is still there and it make you look for what you have rather than what you have lost. Keep strong for her and for your family, try to balance the needs with the time and energy you have. You are right this is a cruel condition that for the most part is under the radar. Love and hugs as you struggle to juggle the impossible, from one carer to another.
Hi, just wanted to quickly thank you all for your replies and messages, it's so helpful to know others are also going through similar struggles. I will reply properly when I have time. Thank you x
I echo all the replies you have had from our family, which you are now part of. We all have each backs. This is an extremely safe place to kick and scream at the injustices of life. Nobody is going to shocked at what you say or think, all too busy feeling exactly the same.My main point I want to ask you, is WHY on earth are you feeling guilty. Please, please re-read what you have written, put somebody else’s name at the bottom. Your whole world is crashing around you, yet some how, you are looking after a husband, two young children, plus looking after your Mum with PSP. Not one of these, is a one person job, but here you are, coping! So I ask again why the guilt? Of course days are going to be hard, you reach the end. We all have, but you ain’t Superwoman, nobody is, yet we all try!
One very wise person on here once said, “My job as a carer is to find the best care I can for my loved one, not necessarily be it!” Any body can provide good physical care, in fact in some cases, better (safer) than you, as some tasks need two people. Only you can be your Mum’s daughter, hold her hand, tell her you love her. Please don’t put yourself in a position, where you become too tired to do that.
My husband had PSP and died over five years ago. My one and only regret now, is I spent far far too much time, doing the caring side, that I forgot I was his wife, which he desperately needed me to be.
Thank you Anne for posting these words. I'm so sorry for your loss.I'm also new to the group and am so glad I've found you all. My Mum was diagnosed with PSP in the summer of 2020 after an earlier Parkinson's diagnosis. After a fall, two hospital stays and an attempt to have carers come to the house four times a day, we had to take the heartbreaking decision to move her, first to residential care and then to a nursing home. The guilt is all encompassing at times - even with her now getting 24 hour a day care, I spend so much time and energy on the 'admin' side of care (my Dad is also terminally ill, so there are lots of medical, financial and practical tasks) that it's hard to take a breath and focus exactly on what you have said here... just being her daughter. I agree too with previous post too about discussing your parents' wishes while they are still able to express them being so important... my Mum agreed to a DNR when she was last in hospital but we are now facing the feeding tube dilemma and her cognition/communication challenges make it almost impossible to know if she understands the choices.
Thank you all for sharing your stories on here. I feel so much less alone having read them. Sending best wishes and strength to everyone going through this.
I'm sorry PSP/CBD/ etc. has entered your family and the hard loss of your father due to the insidious Covid19
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
These kind of diseases manifests theyself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
I am not a phisicyan.
During the 8,5 years in which we was living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers.
Wishing the best for you and your family I am sending you by the internal mail of this chat the notes-document with our experiences and our informations hoping could be of your interest and help.
I think it is urgent that you reflect on the situation of the caregiver and the family. That is why I have dared to advance the paragraphs that refer to the caregiver and the family from the information that I have sent you by internal mail of this chat.
A strong and supportive hug.
Luis
*Releasing the PSP caregiver and allowing him/her to have a life outside the home as well as to avoid strong or continuous physical and psychological efforts is fundamental. The main caregiver of a PSP patient is progressively taking on additional tasks. To the person's previous work (before the disease had been shown) must be added the work formerly done by the PSP patient, plus the management of the illness and the guidance and surveillance of people who form the help team. A special and continuous attention must be directed to the main caregiver and his/her medical history.
Remember that the main caregiver jobs and occupations grow along with age and the disease progression. Without significant help it is very difficult to carry out all these activities without suffering a severe wear-down.
Rest and sleep well is essential. Combat stress, too.
On the first years of the disease, the patient resists losing their autonomy trying movements and exercises that are increasingly difficult and logically increase the risk of falls and damage. The patient often discharges his/her frustration and complaints about the primary caregiver. It is a very hard and discouraging situation but it must be overcome. It is one more symptom. Also it is exhausting being on call 24 hours a day 7 days a week.
From our experience and also from my group of caregivers, it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregivers, far away from the PSP problems. At least ten days of holiday each six months are essential, supposed an effective and intense help with trained personnel throughout all the year.
As Bill F (Smart Patients) said: “As we look back on where we are, we have a wonderful support team of medical professionals, fitness trainers, church folks, nonprofit groups, friends/neighbors, paid caregivers, family members. It's absolutely amazing. Start now to build your team. You will need them, and they'll all want to help.”
JEN2017 said: “Nobody could/should go through this hard disease alone. Especially the caregiver”.
Someone in the community of caregivers once wrote “it is not my job to care for my loved one; it is my job to find the best care for my loved one”.
AJK2001 said:“A demanding selection of external caregivers and their renewal depending on the circumstances and evolution of the disease is essential to maintain a good quality of life for both the patient and the patient's family”. This AJK2001 suggestion is essential to me.
There is always the possibility for the caregiver of losing patience, or not having enough hands for the task at hand. It is then when he attacks the feeling of guilt, unfairly. Be careful.
No one will understand you unless they have been through such an experience. There is always the feeling that you could do better and always keep your nerves under control. We are not perfect and whoever does everything she or he can is not obliged to do more.
It is worthwhile for the caregiver to report on the typical progression of the disease and then take each day as it comes. All patients are different and even with a lot of accumulated experience about the disease the caregiver must be prepared for what he did not expect.
Faced with the dilemma of caring for the patient at home or in a nursing home, I share these words from “Dance 1955”:
“How is it that there is so much ignorance in nursing homes hospitals etc etc.? When my husband was diagnosed with this disease I didn’t understand it either so I googled it.
Whenever I take him somewhere a nursing home/hospital I always give instructions/ information about the disease but it doesn’t get read they don’t have time so I have to spend all my time going in and eventually taking him home as it’s easier for me in the end.”
In our particular case, we decided to care for the patient at home. This implied a significant economic cost and a demanding personal dedication on the part of the caregivers, especially the leader caregiver. As well. I believe we did what was best for the patient, caregivers, and family members.
Finally, reproducing the phrase of Anne Heady (active participant in PSP-HealthUnlocked): "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"
My heart goes out to you reading your post. What jumped out at me straight away is the fact that not only are you still suffering the rawness of losing your dad but you are also suffering anticipatory grief at the prospect of losing your mum, which from my own experience can be just as intense as the grief felt after the loss of a loved one. You’ve been dealt a double whammy of grief whilst trying to look after a young family at the same time as caring for your mum who is dependent on you for everything. Of course you will lose patience with her and then feel guilty, of course you feel guilty about the lack of time you are able to give to your children, that’s the nature of the beast and to be honest I doubt there’s many folk on this forum that have been able ‘to ditch the guilt’ over one thing or another.
You say you have siblings who are willing to give you a break so make sure you get something regular put in place so that you can spend time enjoying family life, yes you are allowed to take time out to enjoy yourself despite everything.
Most importantly though, speak with your GP and tell him/her how you are feeling, lay it on the line that you are drowning, because to be honest we are all guilty of saying “I’m fine thanks” when asked how we are doing even though we feel ripped apart by fear, anxiety and sheer exhaustion. A bit of counselling (I appreciate its not for everyone) may just be what you need to help you to cope with the intense grief and spiralling emotions you are obviously feeling and also you need to explore getting more help because PSP as you know is progressive and caring for your mum will get a lot harder, sorry to be blunt but that’s just fact. You need to find out what extra help is available before it becomes a crisis - the thing with PSP is that things can go downhill in the wink of an eye.
I really do hope that you will push for the help and support that you so obviously need and give an update on the forum at some point because your story, and how it unfolds, will undoubtedly be a help to others on the same journey.
I'm so sorry for your loss and everything you're going through. Please get support for yourself in any way you can. It's been six years without dad now - he was 64 at diagnosis. I can't imagine losing my mum too.
We’ve all had the guilt thing, you are only human and we do our best, my wife Ang57 asks why am I keeping her alive and suffering (that’s a tough one to answer) I thought my dad going into dementia care was hard but PSP tests us all to our limits, look to your family it helps. Keep strong, and don’t feel guilty
I think you are amazing and what a lovely example to those two little girls . I have CBD so no experience with PSP but there are lots on here who will support you … ❤️
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