My husband was recently diagnosed with PSP, which comes on the tail of a stage 4 cancer diagnosis (he's in remission as of now). We're both already deep into burnout country. For two years, his PSP symptoms were masked or excused as side effects of his chemo/remission drugs, but as they worsened, they couldn't be explained as side effects anymore. My husband is emotionally/mentally/physically drained, and now to be dealing with this new diagnosis has pushed him into a mental state of denial. Quite frankly, he's a total mess (understandably). I'm his primary caregiver, and I've recognized the symptoms of my own burnout and have hired help to run errands and do some driving (husband isn't driving)—does anyone have any more ideas on making burnout manageable. It seems unlikely that burnout recovery is an option because of the high stress of PSP and my husband's growing needs and dependence. Any ideas would help.
Also, I'm glad I found this page. Reading everyone's post makes this feel much less lonely.
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MLea
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My admiration goes to you for recognising and admitting that burnout is real. While your husband is the one with the diagnosis, it's easy to underestimate the impact on your own life and your physical and mental health. You are so young as well, nothing can prepare you for such total upheaval.
Please be kind to yourself.
If you can afford to pay for help, use it unashamedly.
Push for everything you - and your husband - are entitled to.
It's easy to say and difficult to do - swallow your pride and accept help where offered.
I might try to take my husband somewhere and let him experience the seaside or the forrest and end up needing the kindness of strangers to get back on track (literally). It's OK.
I've chosen to keep working full time. It feels cynical to say so but I'll still need a job when PSP has taken its course 😢. So a large part of my earnings go towards professional care, so that I can focus on something outside the home for 35 hours a week. The carer will do the dishes, clean the floor, put away laundry 🧺 - I've stopped protesting and instead I appreciate the help.
My work place also gives some extra leave for carers, and I've stopped apologising for using it to cover the inevitable doctors appointments and emergencies and recovering from sleepless nights. I'm ignoring those who criticise my work commitment saying "Of course we have sympathy for the situation but...". It's OK.
I get an allowance from the local council, covering 4 hours care per week so I can do things "just for me" like going for walks with a group in my village - or sometimes just so I can have a shower and a nap. I'm using every hour I can get even if my husband doesn't always understand. It does me good.
I'm currently awaiting the assessment for Continuing Health Care (CHC - it's a UK thing) and hoping it includes some respite care so I could visit family in my home country. That might involve my husband going to a care home for a week or two - the step children might not like it - it will be hard but I'll consider it anyway.
I am trying to fulfil my husband's preference to be cared for at home. At the same time I try to prepare myself that it might not be possible.
So please be forgiving. To your past, current and future self. To your husband. To people around you who can't understand. The only blame is for the disease (s).
Thank you so much for such a thoughtful reply. So extremely helpful. I work from home, which means 5am work days and they’ve become a sanctuary bc my husband sleeps later than me.
Hearing someone else reiterate the need to accept help makes me feel like less of a failure (I realize I’m not but stress is a wild ride). - I’m going to get my butt in gear and use all of the resources available to me. You’re right, why shouldn’t I use them .
Big hugs back at you, and stay strong in your journey 🌸🌼
I admire you're spirit and focus on looking after not only your husband but yourself too. I won't lie it's hard so do carve out what you can for yourself aswell as supporting your husband. Get all the help you can- get all the professionals involved and make friends with them, shout loud - OT, physio, neuro or parkinsons nurse. Get any benefits you are entitled too- PIP for husband, carers allowance for you, carers assessment to get some free care hours, blue badge etc. If friends and family offer help take it, don't just accept their vague offer of if there is anything you need - tell them exactly what you need from them. Pay for whatever help you can afford - gardener cleaner, ironing etc whatever helps you most. I found it hard to relinquish things I used to do but recognising I'm doing everything now and need some help. One of the best things I did was to get a carer in for a few hours per week initially so I could go and do something I enjoyed. It was something to focus on and helped start the care system navigation which was helpful as things progressed and more care needed. Look at what counselling might be available, not for everyone but can be useful to have someone to talk to confidentially. For husband look at what community activities might be available in your area, Social Prescribing service can help - my husband goes to a gardening group and an art session where the volunteers are lovely and as symptoms have progressed they have adapted to keep him involved. Feeling that you are planning and taking charge can help manage stress and helps you be prepared for changes. Finally I wouldn't underestimate learning about chc the NHS funding for care. Its tricky, complex and hard to get but start reading now whilst you have the time and energy and you'll be in a strong position to know when it's the right time to apply and to have the knowledge to do so....oh and finally I find wine helps 😉 take care and ask anything on this site everyone is so knowledgeable, kind and helpful . Take care Milli dog
I completely agree with previous comments. On an aircraft you have to put your oxygen mask on first before you help anyone else . This is a good approach to use. You have already had an exhausting time with the cancer treatment.
Our local hospice had a day centre - maybe worth exploring - this would free up a little time for you to breathe. Sitters, friends, for an hour are great but professional help is also essential.
I had a list of nice things to do - tried once per month to have a treat - a pecicure, a day out with friends, cinema trip etc. writing the list and ticking off was helpful for me.
I will be honest, no matter how much help you get you will always be torn, either with guilt or sadness or many other things. But remember you are doing everything you possibly can and you are enough.
Bengenser's and Millidog´s suggestions seem very sensible and very practical to me. It matches our experiences.
The PSP process is hard on the patient and demanding on caregivers, especially the primary caregiver. The main caregiver must act more as a "manager" than as a caregiver, preparing the infrastructure of the house, or, where appropriate, the residence, in the most appropriate way for a patient who will have his mobility increasingly compromised along with various symptoms. .Install the bedroom, toilet and shower room on the ground floor with easy access through wide doors (to allow the passage of a wheelchair), eliminate carpets, protect corners that could add damage in a possible fall, etc. .it's an important thing, in my opinion, to plan.
After a cancerous process, the concern is twofold: towards the patient and towards the manager-main caregiver.
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 illness had been shown) must be included 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.
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, supposedly an effective and intense help with trained personnel throughout 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.” And I would add that the main caregiver is the most appropriate to frequently express affection and accompaniment to the patient without excluding other friends or relatives.
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/he can is not obliged to do more. It is relatively frequent that a situation, a small accident, a major difficulty, a rebellion of the patient puts the caregiver on the verge of losing his nerve. Leaving the place for 10 seconds and thinking that the enemy is the PSP and not the patient, you can avoid difficult situations to regret.
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 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. On our case and circumstances I believe we did what was best for the patient, caregivers, and family members.
PSP is a rare disease, little known by GPs, hospitals and health professionals.
Finally, reproducing the phrase of “Anne Heady”: "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"
Hello Mea, what an 'interesting life path' you and ur partne have chosen!' I am male 83, PSP diagnosis 6 yrs ago, still active and social in life, no more driving, and taking charge much as I can ( so important). My partner/carer has trouble managing me! I've kept a diary of useful practical things to work on in my experience - covers loads. Happy to send you a 7-page copy, but need ur email for that. Pls send it if you like me to. Very best wishes and do remember PSP = "Please Stay Positive". TimbowPSP xx
Receiving a diagnosis for PSP is horrendous for anyone but to come on the back of thinking you’ve fought off stage 4 cancer is the worst cruelty. I feel you and your husbands dispair. If you are in the uk ask for a referral to your local hospice. I have found their support invaluable. In the UK hospice is medical guidance, symptom management and emotional support and they liaise with my husbands MDT and helped us with CHC funding applications. They will support you at home. The other brilliant support is the PSPA in the Uk and they provide a phone support contact for carers and are an absolutely brilliant source of advice. They have support groups in some areas and zoom meetings for carers to share their issues and thoughts. No easy answers as I’m the main carer to my 64 year old husband at home and feel I am on the brink of a panic attack 24/7 but no choice but to keep going. PSP is a rare condition and you have to explain it constantly to medical people and others but these groups are also brilliant and supportive and let you realise you are not alone.
Dear MLea. You have received such excellent replies already so I have only a little to add. But first of all, it is so good that you have acknowledged your stress and asked for help.
It sounds like you may not be in the UK, but perhaps in the US or elsewhere? Here in the UK there are carers groups, both live and on zoom, as well as a group for those 'newly diagnosed with PSP' . I am wondering if there is anything similar where you live?
If not, whichever hospital diagnosed your husband may point you towards a therapist /counsellor (someone who is knowledgeably about PSP) to whom he and / you can talk. There are all the emotional things you are facing as well as the practical ones.
As others have said, you both need all the support you can get. Have you family? Children? Close friends? These can be invaluable helping to support you. too. It is important that you both are not alone as you go through what is ahead.
If you private message TimbowPSP with your email address, he can send you his story--which is excellent in helping to look at what is possible.
Hopefully with the right help, your husband will be able to pick up at least some activities that used to give him pleasure. Eleanor
Thank you for more great ideas. I’m in Canada with good access to resources and everyone’s answers have been so helpful in finding/knowing what is useful.
Hiya. I am so very glad that you have found this forum, which no one wants to have to find but which will become like an international family for you: even in the middle of the night someone somewhere will be having their daytime and can often answer a query or just respond so that you don't feel so alone. I have written several poems that I could send but as you have already had some wonderful replies and advice so I am not going to add any more but send you a poem as below. Big hug Ali Bee x
Sorry that this horrible disease has knocked at your door. I understand what you are going through. My husband also had cancer and went through chemotherapy and radiotherapy. Fast forward 3 years and in remission he, too, was diagnosed with PSP.
As a primary carer you are shouldering a huge responsibility and looking after yourself is so important. Burnout is real and it's good you have recognized it and already got help with some things to relieve the situation. Please continue to do so and don't feel guilty or a failure. You've had some excellent and wise advice given in the replies you've received. Listen to them : they understand.
I tried to carry on until I was almost exhausted before I asked for help.
Don't do as I did. The road back from burnout is long and hard and coupled with bereavement it seems unattainable.
Don't underestimate the power of PSP to bring you to your knees. Cancer seemed a piece of cake compared with what PSP demanded of us both.
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