Giving up

[Kimmyliz12]

I can't do this anymore had enough of this awful illness. Ì still have full mental capacity I use to draw detailed animal portraits. Ride my horse now I can't waĺk talk or look after myself it's like a living hell and I know it will only get worse. Ì just don't know how to keep going this is not a life.

[Kevin_1]

Hi Kim

I am only a carer and can never really grasp what it is like to loose functioning bit y bit over time.

I have watched my wife slide down this miserable slop and it is heartbreaking. She is toward the end now. However she has adjusted at every turn and by enlarge she has adjusted, albeit being angry at the illness and her situation.

She finds value even in her diminished life small things like hearing the news, listening to a book, or a conversation. And, big things like a kiss and a hug all matter more now.

I think the thing is perhaps to try and find acceptance at each stage and then decide how you are going to manage at that point. You can think of "manage at that point" as fighting the illness. This is not a passive acceptance. You rail at the gods, or shout here as much as you want. We are here.

I've read your previous posts and see that you have a lot to cope with. Do you have practical support in place?

Best to you

Warmly

Kevin

[honjen43]

Welcome to this site, kimmyliz12.

I understand your sentiments well, even though I have only nursed my husband through a short spell of CBD.

Know that there are others here who are also battlers and fighters with you. Some seem well past your stage yet they still hang on to life! They often have a caring, much loved partner who has fought alongside them to give them the best quality of life possible, and to be their advocate when they have lost their voice but not their mind.

I hope you have someone dear to you who can be by your side on this awful journey. Share your thoughts with them, and see what you can dream up between you to lift your mood.

I can do no more to help - but feel I need to at least reply and say something - however inadequate it may be!

Big hugs from DownUnder

Jen xxx

[Hidden]

It is a hard thing to deal with. Some days are going to be worse than others. I am the care giver and some days I don’t think I can do the care giving any longer. Deep breath. One day at a time we go on. Whatever your decision is will be made by you. People on this site know better than most what you are going through.

[Karynleitner]

💙

[Tippyleaf]

I wish I had wise and comforting words!!

My husband found comfort in “ taking control’ and making his choices clear. Together with his Palliative Care Consultant he wrote an ADRT ( advanced directive of refusal of treatment) I. E what he did and did not want. He found talking to a counsellor helpful though it was exhausting and communication a big challenge they did manage. If it was a difficult session I would pop in to interpret. If you have a local Hospice -would urge you to ask GP to refer you there. Art, music and complimentary therapies all gave comfort and pleasure to my husband.

I do not underestimate that learning to live this new life is a huge challenge but there are still pleasures to be had. I hope with help and support you too will find some pleasure in life again.

Sending lots of love

Tippy xxx

[enjoysalud]

I was the caretaker for my son whose first symptoms emerged March, 2014. He too was as physically fit as you have described yourself when symptom free. He has since died, May 4, 2017.

Since you live in the UK perhaps there is care-taking help. With care-taking a bond is formed, a friend.

Whatever decisions you come to regarding your care, I'm sure they will be correct for you.

Yes, the disease is beyond ...................

Los Angeles, CA, USA

[raincitygirl]

Kimmyliz, you are right. It is brutally, bitterly, completely f___ ing unfair.

Every one of us feels that heartache of deeply caring for our loved ones and community members who are afflicted. Yet we can't do a damn thing to take it away.

Stay with us and rant away. God knows you deserve it.

❤️. Anne G.

[Satt2015 in reply to raincitygirl]

Anne

I really didn’t know how to reply to this post for kimmy! Your reply is spot on!! X

[Hidden]

Dearest Kimmyliz

I cannot say l fell your pain & frustration with this horrid disease. . .

But my Mom had PSP & it was heatbreaking just watching her deal with each new stage. I always thought she dealt better with it than l would have in her shoes.

Sure do wish l could do more for you than merely sending you heartfelt hugs. Please vent here whenever you need to because you won't find a more understanding group of folks anywhere on this earth.

Sending Hugs... Granni B

[LuisRodicioRodicio]

Hi Kimmyliz12!

During the 7.5 years in which we lived with my wife´s PSP .

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

On most of PSP types the only thing you can do is counteract the symptoms…....but, despite how hard this disease is for everyone, it is posible to achieve a reasonable quality of life, even interesting.

Hugs, courage and luck.

Luis

[Confusedandlost]

Like you I still have full mental capacity even though the rest of my body is deteriorating rapidly. It is extremely difficult accepting that things will never be the same again and I understand completely how frustrating it is. I have no words of wisdom to help and only posted this reply to let you know you are not alone in how you feel.

Best wishes

Alan

[Aprilfool20]

Oh Kimmyliz12, I know exactly how you feel! Like you,I still have full mental capacity and each day is so hard,just want to fade away. Stilll able to get out and about with help,but am starting to think why? Trying to keep interested in what is going on for my husband and friends sakes but wonder how long I can keep this up. On antidepressants to stop me crying all the time as distressing for others. Being on my own all day is so soul destroying. But don’t want to imagine what it’s going to be like further down the line.

I used to be so active too- line dance,4-5 mile walks three or four times a week,play guitar,gardening and working- all now gone. I’m lucky at the moment that I can still just about keep us clean and cook meals,but have to have a cleaner and gardener as hubby has to work full time.

Do you have someone to help you?Where are you?uk or elsewhere?

I take part in research,too late for me,but may help future victims. Be assured you are not alone in spirit anyway.

Mention has been made about the local hospice. Check with your GP as I was referred to mine and it’s been of enormous help, people very sympathetic to your situation . They can help with counselling. I’m not religious, but I let it all out to the chaplain there and felt better just speaking to someone who understood the enormity in the change of lifestyle.

We have no choice but to hold I’ m afraid but try to take each day as it comes. Lots of hugs. Jayne xx

[Baileyboo]

Dear Kimmyliz

I am so sad that you are struggling. I don't know what I can say to make you feel better.

If I had a magic wand it might help. Sadly nobody has any answers for you.

I totally understand your frustration and I am so sorry I can't advise you to do anything different as this disease is relentless.

Love and hugs

Pat xx

[DeDeDickson]

Oh, Kimmyliz, how I feel your pain. I know that getting through this is a grieving process ... to accept the loss of our future as we thought we knew it ... but, for me, I feel like I am totally stuck in the anger phase of the grief process. It is frustrating, infuriating, and exhausting.

I “got nothing” to offer you in the way of coping mechanisms but I certainly can offer my heartfelt empathy!

xoDorie

[katras]

Dear Kimmyliz12,

I too am in your situation, having full mental capacity but having real trouble with movement. My day is spent in a recliner getting up every few hours to use bathroom, which I can still do alone.

I will finish wth Abbvie clinical trial next month & will definitely receive the “drug” in August. My hope is that it will stop the progression of the disease, but I ask myself frequently if I want to live like this. I still thoroughly enjoy my children & grandchildren, so today the answer is yes.

I understand your feelings, but just want you to know you’re not alone. Please let us know from time to time how you’re doing.

Kathy

[Cade08 in reply to katras]

Please keep us posted as to the results of your trial. My husband was a few months shy of finishing his Abbvie clinical trial when he died and I would so love to hear that they have found something to help. He knew it wouldn’t help him, but he was willing to do it for others.

[katras in reply to Cade08]

Dear Cade08,

I will post the results of the Abbvie trial, although I won’t know until January of 2020 whether I was receiving the drug or the placebo. I started the trial in August 2018, but the last participants to start began in January of 2019 thus the delay in finding the results.

[Cade08 in reply to katras]

Thanks. I really appreciate that. Hopefully I can get some results from his trial soon. I still don’t know whether he was getting the drug or the placebo, but sometimes I felt as though he might have been getting the drugs. Anyway, we were hopeful.

[ncgardener799]

Hi Kimmy, I don't post often, but I read messages daily. Your recent message has touch my heart . My husband recently diagnosed with PSP after almost 4 years of progressive symptoms. He often expresses your same feelings-he is scared, frustrated. We both cry and then try to pull it together and do the best we can. Has anyone suggested a device to help you"talk" via a computer. Not being able to express your feelings and needs so frustrating. I hope you have a good support system-the "family" on this site is amazing-use this venue to share your feelings and "voice" you thoughts.

[SewBears]

I feel like I should say something but I haven’t got a clue. I googled some words of encouragement but it just doesn’t fit this cruel disease. I’m so sorry is all I’ve got, plus... since this post is two days old, I sincerely hope that you’re feeling better today. My thoughts are with you.

Love from I SewBears

[Mzacc]

Hi Kimmyliz12,

Your words are so heartfelt and I'm so sorry for what you are going through.

I have been watching my mum suffer the effects of PSP for the last five years now and can only imagine your despair.

Yours is the voice that speaks on behalf of people like my mum who can no longer speak or communicate in any way.

I sincerely wish you all the best and please know that we are here for you.

Maria xx

[Kimmyliz12]

Thanks for all your kind words and encouragement I am lucky to have an amazing supportive family and help from a team of professionals. It's just some days it seems unbearable I know I need to find joy in small things and stop dwelling on what is lost. It's like trying to find a new identity as the person you were is gone. Your replies have been a big help and made me feel less alone.

Kimmyliz xxx

[honjen43 in reply to Kimmyliz12]

Hi Kimmyliz,

Am pleased to see you seem to be a little more "up" today!

You also appear to have "collected" others in a similar situation to yourself.

Make sure you keep in touch with them and support each other - and keep in touch with the rest of us too! You now know you are NOT ALONE any more, and that this damn disease is not rare here!!

Make the most of what you CAN do! If you can still draw, then draw! Or take up photography! If you can't do something, take time to work out HOW TO DO IT! Where there is a 'will' there is a 'way'!

Work out a means of communication without words with those you love and who love you, so that you all have that in place as it becomes more necessary. And do all those other necessary legal things! And make a 'bucket list', big or small! Sounds like you might get a little busy!

You write beautifully, so post here while you can! Read, research people who post, and see what courage they have shown, and still show, in fighting PSP against the odds. Get mad, get angry, but fight!! Document your journey for others; involve your family here too. It will help them to know they are not fighting alone too.

Big hug and strength!

Jen xxx

[AJK2001]

I wish I had as good a way with words as so many people on this site do but I don't, but I did want to let you know that whilst being a care giver I don't know what it's like for you, I do feel for you. With best wishes...