Hi every one
I am finding it so hard now caring for my husband who has PSP.
He can not walk, talk & coughs all the time after eating & in bed at night.
Feeling very selfish just want it all to end for him & me. He has no quality of life any more
which means nether do I. Feeling very sad at the situation knowing there’s nothing I can do. How do you all cope
Hi. I am so very very sorry that you are feeling so desperate at present for both yourself and your husband. It is not selfish to feel as you do: you are are only human and to feel useless at being able to do anything to improve life for either of you, is not a good place to be in. Posting on this forum is certainly one way of coping because it releases your true feelings and everyone here will understand where you are coming from. No one on here judges or is shocked because we have all been where you are and will therefore only reach out to send you love and virtual support. I wrote a poem about how I survived which I am posting below. I hope that it will help. Some days I didn't even manage one day at a time but managed 1 hour at a time instead. Big hug. Love AliBee
I thought my life would stay the same,
but my previous life I cannot reclaim.
One day at a time is how I’ll survive:
without that structure, I’ll not stay alive.
If I thought in the future I’d feel like today,
I’d give up right now, there’d be no other way.
For my life has no rhythm; it’s all out of sync:
as if it is missing an essential link.
I manage to cope - keep myself in check,
but then all of a sudden I hit the deck:
I can’t remember what I’ve said or done:
it’s like living in the shadows without the sun.
Exhaustion comes and knocks me flat:
the effort of living causes that.
I must try to accept what I cannot change,
though life like it is, seems so horribly strange.
I must try to hang on to a really good thing,
that lifts up my soul, and makes my heart sing:
like the sun on a cornfield, sunbeams in the sky:
things that cause laughter, not make me sigh.
Dear AliBee1 , I am so fortunate to have read your post where you also included a wonderful uplifting poem you'd written . I loved it ! THANK YOU so much for sharing that !! Amazing !!!
Wishing you all the best AliBee1 !
Hi 204010 in the UK , We're here , we care , and you're definitely not alone in what you're experiencing ! On the other hand , please know that I'm not making light of what you and your husband are going through. I have been living the PSP "life" as a carer for my sister for over ten years. It's been unbelievably draining but also a learning experience ! As someone mentioned recently on here , we all die from something , and that's about as philosophical as acknowledging mortality can get , I think ! How best to cope ?! That's a conscious effort , for sure ! I hope that you have caring and accessible family members , friends , and acquaintances who you feel comfortable sharing your thoughts and feelings with. Some people find it most helpful speaking with a therapist .
I think what we caring "carers" often unwittingly do , is to be empathic to the point where we lose ourselves ! AND depression can cause us to lose our objectivity also !!! AND you also need to be able to sleep !
There is only SO much that we can do , and with PSP and so many other illnesses , our hands and hearts can't make it go away.
It's aok to acknowledge that you're bottom line , human yourself ! You need emotional support and other forms of assistance to be as well as possible and to be able to help and relate to your husband. Do call upon others and by the way , get yourself out of the house with people in place to care for your husband for periods of time ! Even if they happen to be friends who want to help out !
I'm not in the UK , but reach out , speak up , and you will hopefully be surprised by positive results !
That is my hope for you !! There is only SO much that one person can do !
My thoughts are with you 💜
One foot in front of the other !
AND please speak up to get the help you need for yourself and for your husband ❣️❣️
Sending good karma across the ocean to you ,
Elise
Have you spoken to your local hospice to get some support for both of you?
This is the hardest thing any of us will do, but we all need support.
Sending hugs 🤗 at this difficult time. We all understand what your going threw. It’s equally as hard for you being the carer as your husband who is suffering. I regularly have what I call a meltdown and struggle. Your not alone💜
Hi 204010!
I'll start with the summary that Anne-Heady wrote years ago and that was my "guide phrase" throughout the trip:
"Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"
This thought is not uncommon among caregivers:
“This disease is so unpredictable I feel dread day to day of what it will bring”.
I submit for your consideration the following reflections:
The town hall of my municipality organizes every year a course on "Psychological Support for Caregivers of patients with neurological diseases".
The first thing that makes you think is that external and professional "psychological support" is NECESSARY for caregivers.
Neurological diseases, and PSP in particular, bring with them a "roller coaster" of symptoms that impact the caregiver.
I reproduce below the teachings of a prestigious Spanish psychologist:
The work of a caregiver produces a STRESS that is good to face the challenges that the diverse and changing symptoms produce.
If the caregiver does not have effective help and that STRESS is not adequately relaxed, it is likely that this will lead to ANXIETY trying to personally reach out and solve all the problems. If ANXIETY is maintained, the nervous system is blocked and if this situation is maintained over time it can lead us to DEPRESSION, a mood disorder that can lead to very negative situations such as not feeling useful due to being overwhelmed, generating harmful thoughts such as hating oneself being able to reach very serious situations.
Statistically, DEPRESSION affects women more than men.
Without health you cannot love or care for anyone in good condition.
In short, the caregiver must take their own physical and mental health and well-being very seriously.
My suggestion:
If you have the financial capacity and the ability to lead a small team of professionals and caregivers who cover the needs of the patient for at least 85% of the 24 hours a day, 7 days a week, seek effective and efficient help for the patient and for yourself.
In a different case, a specialized residence for patients with neurodegenerative processes may be the solution. It's a tough decision but I don't see another one that doesn't also make the caregiver sick. I agree with the suggestions of "Kelmisty".
Moreover, 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.
Hug and luck.
Luis
Hi 202010, it is not at all easy for you to face these changes. Please contact the PSP Association (pspassociation.org.uk) the helpline is manned by those who understand and can furnish you with information & support in your area. Also they have a Zoom Group now for men, the next on 21st August, so you can speak to and learn from others facing the same as you. All my best wishes.
Florence Nightingale Hospice saved my sanity when I was in the throes of what you describe. They took my husband in for a respite stay. I got rest and he was assessed for symptom care and most importantly the focus turned to comfort and acceptance , not heroics. They helped me understand I needed help and carers came into our lives. Try we’re amazing! It didn’t take away the pain and sorrow but it helped us both enormously. Your feelings are not selfish. They are pure love and compassion.
Hello my fellow warrior,
I'm in exactly the same position as you. As of yesterday my dear husband in year 6 of PSP, now has to be hoyer lifted everywhere. He can no longer stand and make transfers. When you think it can't get any more difficult...it does!! Truly unbelievable!! I could have written your words exactly. The only difference is 2 months ago we signed up with hospice. Best thing we ever did. Now, I'm in the USA so our medical system is different than yours but if you can get hospice involved, I highly recommend it. One thing they did for my husband is use oral morphine that I put inside the cheek of his mouth. It stops coughing immediately, helps breathing so his O2 SATs go up to normal, and of course alleviates pain. My husband has upper back and neck pain. The second most brilliant drug they have me give him under the tongue ( it dissolves) is called hyoscyamine. It dries up the secretions in their throat, airway and lungs so that also helps to stop the coughing because now he's dry. Those 2 drugs have helped him immensely. Before yesterday when we started using those 2 drugs, they put him on Valium for his neck pain. I always thought that was for anxiety but it really worked for his neck pain. He's a big guy but the doses varied from 2.5 mgs to 5 mgs, to 10 mgs depending on the pain and time of dose. Higher dose and you'll have more difficult transfers. Can cause falls too but Jim hasn't walked in over a year so that isn't an issue for us. Anyways, I'm so sorry you're in this low point, but know you're not alone. I'm right beside you, across the pond, but in spirit.
Hope this info helps you. Sending warm hugs and strength your way. ❤️
The struggles are real , the challenges beyond anything I could have imagined when my husband was diagnosed. My husband of almost 53 years passed from PSP 3 months ago-after struggling and fighting the disease for 9 years. Seek help from Hospice, friends, family and any resources available in your area. The online support groups will continue to provide you with support and a place to share all you are going through without judgment. I miss my husband everyday and now face new struggles of finding my way as I grieve and heal.
It was a long hard journey and my mind was often racing with negative feelings and thoughts, and mostly how was I going to continue providing care on days that I thought I had nothing left to give. We are all doing the best we can for our loved one-If possible get help even if its only a few hours a week- a little mini break for yourself. Take that time to step away from your caregiving responsibilities even for a short time. It will give you something to look forward to. The caregiving will come to a close and in the blink of an eye they are gone. Hugs for strength and courage. Pat
Sending love and support. My husband had PSP. You might talk with your doctor to see if he is experiencing aspiration after eating. My husband coughed when he aspirated, or had pneumonia. God Bless.
Don’t beat yourself up. It’s an impossible situation. When my mom died (peacefully on her sleep at my home), I literally said “thank you”. I felt terrible for some time about it, but now I realize it was pure relief for us both. We’ve all made mistakes and just do the best you can, by him and yourself.
Social worker
Husband progressing quickly 
Joan v Hi 
