How much more can a person take!!! Hubby has had a horrific couple of weeks dealing with more stages of this messed up disease!
He is on constant pain medication,had a catheta put in is completely bed bound isn’t tolerating his peg feed ( makes him vomit) is on IV fluids has had antibiotics and sleeps most of the day when he’s not groaning in pain!!
Just feel so hopeless athe moment!!!
Hospice for pain relief?
Not in hospice for just pain relief, he is on a variety of medications to try and keep him comfortable and not in any pain due to his body shutting down!
Sorry. I was hoping there was something simple.
Nothing simple about this disease.
My husband is not far behind.
I am so sorry.
Sending you both love and hugs. Hope your hubby”s pain and comfort will soon be better managed
Love Tippy xxxx
So sorry to read your message and hope the pain will stop sending you a huge hug xx
Just keep on hanging on in there for him, it's so terrible when you feel so helpless. This is a time when you just want it all to end for him and let his poor body be free from the grip of this dreadful disease. My heart goes out to you both.
Sending love
Kate xxx
Your post is just heartbreaking and I feel your hopelessness, a place I visited many times before Rod found peace. I wish I had an answer for you but so often, as the disease progresses, there's just no answers and we are forced to watch and wait. That said, pain can generally be controlled well if the pain relief is being administered regularly so that's something to investigate. You say he is being peg fed; has the peg been checked to make sure no infection around the entry site and most importantly make sure the feed is not going in too fast as that would cause it to come right back? I understand that during the early days of a peg, for some it can be uncomfortable if not painful. i assume his medical team are working on all of this with you but if you feel they are being passive, get tough. I will be thinking of you both and wishing for better days for you. Love Hils. x
Big hug to you both. The hospice palliative care team can be involved even if your hubby is at home and maybe they can help with the pain relief to make life gentler for you both and help support you both. Love AliBee
Demlac,
I came across a quote just before I read your post on Hopelessness from Erwin McManus, “hope lifts us out of the rubble of our failures, our pain and our fear to rise above what at one point seemed insurmountable. Our ability to endure, to persevere, to overcome is fuelled by this one seemingly innocuous ingredient called hope.” My prayer is that you can find this hope and see past this seemingly insurmountable time of this cruel disease. You are not alone in your feelings. I too was at that point with my wife in her final stage, but have learned since then that there is hope.
Blessings,
Bobby
That is such a meaningful quote Bobby. I suspect that the majority on this forum will have gone through/will go through at some point, that hopelessness for which there seems to be no end. Ten months on from losing Rod I too have learned that there is hope and that whilst grief will last as long as it lasts, it can co-exist alongside all the joys of life still to be had. It just never feels like that when you are in the middle of such turmoil. Wherever we are on our journey, hope is waiting for us when we are ready to embrace it. Thanks for positing, such food for thought.
Best wishes,
Hils
xx
I know how you feel my husband has had one UTI After another, this last on put him in the hospital for a week. He’s home now has a pick line for his IV antibiotic and a catheter also I can no longer help him get up I wish I had comforting words for you. Just hang in there and know you’re not a long. God bless.
Marge
The master will keep going in the fight untill he feels comfortable . The old bag has been through similar episodes and still keeps going to give me her orders. It is just her way of keeping her thumb pushing down on my head. Never feel hopeless.
I am so sorry to hear about your husband's suffering. Hospices in the UK do work in the community for people approaching the end stages of a terminal illness, especially for palliative care and pain relief. Perhaps you might find a local hospice that can help you both? Again, I am so sorry to hear your story. Sending you strength and solidarity for the days to come. Amanda.
I feel so deeply for you 😔
your dear hubby is way too young to have this indignity and suffering (of course age doesnt matter, but he - and you - have been robbed of even more than some of us, whose loved ones got "more good years in" before CBD reared its ugly head).
Hugs to you for strength and prayers they get his pain under control 🙏❤️❤️❤️
Anne G.
So sorry to read your message. I remember those times and feeling well whilst caring for my father. Unfortunately, there is very little we can do to ease our loved one’s suffering, it seems, that’s the path this disease often takes. But at least he knows you are there with him and love him. I don’t know what else you can do but try to look after yourself. At the end of it all you will need to survive and accept and have the strength to recover. So sad for you, it’s such a hard time.
Sorry, I meant ‘feeling sad’ I don’t know where the ‘well ‘came from. A typo. So sorry.
My husband died July 15. It was 8 days no food or water extreme hell seeing him like this. Peg feeding prior was late to home not getting order in. I reach out to you give you virtual hug. I still have nightmares re living the hospital. He was only 65 and lasted approximately 3 years from diagnosis. Way to young. My heart is shattered beyond but as I saw his suffering this disease is awful. God took him I hope he is beyond pain now.
My husband suffers excruciating pain
There is always something to worry about!
Please God bring him home to you.
Is PSP hereditary????
Medications causing severe side effects PSP need ideas for non medical alternatives
