after 10 years of caregiving with nothing ... - PSP Association
after 10 years of caregiving with nothing in sight I think that if the grimm reaper came to my door I would show him in ,normal feeling ?
HI NOMAMSLAND COME NOW ITS NOT AS BAD AS THAT IS IT YES WELL MAYBE IT IS IF YOU ARE GOING TO INVITE THE GRIM REAPER IN I THOUGHT THAT WAS A GOOD ADVERT MATE DIDNT YOU OBVIOUSLY YOU DID BECAUSE YOU ARE GOING TO INVITE HIM IN BUT I WOULD THINK IT OVER FIRST OR HAVE YOU ALREADY DONE THAT IT MUST BE FRUSTRATING FOR YOU AND ALL CARERS BUT DONT GIVE US ON US WILL YOU ITS NOT OUR FAULT THAT WE GOT PSP WE LIKE EVERYONE ELSE HAD NEVER HEARD OF IT BEFORE SO JUST BE A LITTLE MORE PATIENT WITH US AND FORGET THE GRIM REAPER FOR A WHILE WE REALLY LOVE YOU EVEN THOUGH WERE A PAIN IN THE BUTT SOMETIMES OK MOST TIMES THEN SO TAKE CARE WONT YOU LOOK OUT HERES THAT FELLOW WITH THE HOOD AND CLOAK I WONDER WHAT HE WANTS ALL THE BEST PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER
Thank You for this post Peter. I needed it today.
jrock777 well if you needed it\\ then you got got it \\ I hope it helped in some small way peter jones queensland Australia psp sufferer
good stuff pete rjones as usual!
lol jilll AND A HAPPY EASTER TO YOU !
Hi Peter...no Peter,it was just a thought going through my head at the time and I had to express it,the reason I said that is because I find it so hard to look at Madeline the way things are,having been together since high school she is a bigger part of me than I am of myself,Peter,I,ll be here for as long as the good Lord allows,thank-you for caring and I hope you are not alone fighting this illness,best regards,Rollie,nova scotia canada
Hi Rollie,
Yes it is a perfectly normal feeling! After 10years you should be put up for sainthood. Please stop beating yourself up for your thoughts, that's what we are all here for, so you can express how you are feeling, without anybody judging you! Everybody needs to say out aloud their most private and awful thoughts now again, but where do we go, who will listen. Sorry Rollie, but we are the best you have got and quite frankly, I think we all make a pretty good team. Keep posting and expressing ALL your feelings, we will listen and thank god that we are not the only ones thinking exact the same thing. You are just the brave one to put it down in writing!
Lots of love and big hugs (you obviously need some!)
Heady
Dear Nomansland
Yes, I am with you there for all our sakes. It is my belief that we care and care very much about our loved ones and want them to have some relief or release from this dreadful disease, that's the reason why.
My husband is in his 8th year and it has been a very bumpy ride (see my blogs) whatever I do does not seem good enough in his eyes and I used to tell him, I am just an ordinary person, I ain't Mother Terasa!
But the thing that gets me madder than anything is that there is no real help out there, oh you can read all you want to about "good practices" and social this and that, and medical care, this patch, that pill BUT the bottom line is you're on your own.
Everyday I thank my wonderful carers because they are the true angels, undervalued and underpaid, but where would all be without them, if I could I would give them the bankers' bonuses.
Take care regards
Dorothy Thompson
Dorothy,I hope today was a bit better for you ,I thought Madeline was going to leave us today...what a lousy illness ,hopefully Easter might get us a little Peace...regards,Rollie
Dorothy - where do I find your blog?
Hi mommajo
If you scroll up on these blogs, I'm two above you.
Regards
Dorothy t
Thank-you ,the reaper was supposed to offer ME a ride out,not Madeline,....but as you all express so well no one really knows what we do,as I said to Peter I will get through,love to you all for your honesty,Rollie
Rollie, Rollie, how I know that feeling! But where would that leave our loved ones, in the hands of somebody who knows nothing about PSP, nothing about our loved ones and only interested in getting through the day's work and back home to their "normal" life at home. Who else can care for your wife, the way you do? Who else can remember her as she was when she was high school? Who else but me, can remember the wonderful life I have had with my husband, who else but me can remember the way he restored my soul after the collapse of my first marriage. WE are the only things left in their life that they before this dreadful disease. We can't take that away as well! I know it's hard, but you, me and everyone else in this awful place WILL get through, we have to! I know that seems an enormous pressure and it is, but again, that is what this page is for, so you can vent your feelings and the rest of us can somehow get you through this rough patch! Hang in there Rollie, next week you will be helping some one else who will be going through this. Your experience will be needed and appreciated by one of us.
Lots of love
Heady
You said it all Heady. We are the only ones that know what our loved one is going through. I ask my husband today what he was thinking about and he said dying. I said why and he just said it would be a good day for it. This is so heartbreaking to see him go through this. My heart just absolutely breaks for him. But I just want to do my best for him. Im only gonna have one chance to make this right. Sometimes it appears that Im getting mad at him but it's the situation....this ugly disease. I miss him so much. He is still here but I miss the man I married. Yes we've got to hang in there. Thank you for your encouraging words.
Terri
Hi Terri,
I think missing your loved one as they use to be, is one of the hardest things to come to terms with. I am sitting watching mine paint, just painting by numbers, wondering whats going on in his brain, knowing that he would far rather be out in the garden, or off some where rock climbing, or just out, away from me for a few hours. It must be so awful, just being locked up in this body that won't work, especially for a man like S, who was so in control of his life and lots of others as well. We are one of the lucky ones, we use to work together, so are quite use to spending 24/7 in each other's company, but even then that does get stretched at times. To think of the times I use to have a go, because he was late back from somewhere or just arranged something, without telling me. I would so much love it, if he could just go out on his own for a while. Not for my sake, he needs it, but what can you do, left alone, he will be on the floor and not able to get back up. He is far to frightened of that, so has accepted the restrictions that PSP has put on him.
How I would love 2 minutes alone with the creature that invented this ")£&@@&" PSP!!!!
Keep smiling, that's all we can do!
Lots of love
Heady
We went away for a couple of days at his request. We use to take off and go away for several days. It's get more and more depressing each time. I cried secretly most of the time except once...he ask me why I was crying. It just gets harder. We tried to go for a walk in the beautiful little town that we were in but he just doesn't do well with that walker at a long distance. He has it all over the place and does not look up. He wont let me push him in a wheel chair. We basically sat in the hotel room for 2 days. This morning I was helping him get a shower. He's 55 I am 54. I heard motorcycles out side our door. People older than us riding and enjoying life. It's just been a bad two days. I know you know what I mean. My spirits have been lifted a lot by reading your comments.
Thank You
Terri
Hi Terri, S & I travelled all over, like you at the drop of a hat. I'm only 59, S is 69. So I know what you mean about older people. My Mum, who is 84, spends the whole time moaning about life, her car as finally died and her husband has said no more, she is heartbroken, but I can't have any sympathy with her. S hasn't driven for over a year now!
Perhaps we should have a "chat" with the tissue manufactures, they are certainly making a huge profit from me, as well as you!!!
You must try and get your husband to try a wheelchair. We have used it occasionally, when S had gout and couldn't walk and recently when he broke his pubic bone, (fall in the shower) it actually was a good laugh. Trying to go around a supermarket with S pushing the shopping trolley and me pushing him, stuff comedy programmes are made of. Have to develop a thick skin though, everyone ignores you! Also we have used it, when I have been desperate for some fresh air, S would sit in it for a while, then get out a push the chariot! I bought a second hand one, had a bad day sometime ago and couldn't walk, so I just got what I could, but we don't travel without it!
One thing about travelling, if you haven't already found out about it. All airlines provide wheelchair assistance. It's brilliant!!! Makes travelling by plane so easy, we have found all the staff very helpful, for me as well, you sail past all the queues, get on the plane first, last off, but still first through passport control and no extra cost! Wheelchairs are free to fly as well!
There are wheelers that can convert into a wheelchair, don't know what they are like, but I am thinking about looking at them. S still is managing with a stick at the moment, whether he will go to a walker or straight to a chair, I don't know. But that be something that might help you!
Everything is just trial and error!
Lots of love
Heady
Heady that is what tugs at every part of your feelings,we too traveled steady without any plans...Madeline was the perfect business partner,perfect woman as a wife ,excellent mother,but our time alone are the memories that keep me going,right now I look at her sitting a few feet away and wishing she could shed the burden but unable to think of how I could ever cope without her...each and every day brings terrible sadness.Rollie
Terri...all we have to hold on to is the past ,all the good things that was part of our life,now psp has stolen a great big part,,Madeline has gone from modelling to hardly any eye sight,unable to walk,speak,looks straight up tube fed.and wears depends,...I guess it,s a good thing we cannot see into the future,regards,Rollie
Rollie, One thing this disease does do is really help us to remember the past. The good days. I'm so thankful for the memories of me and Lonnie. I see now that he has always been my best friend.
God Bless
Terri
Ah...Rollie...how many times have I said "just shoot me!" ? Of course we don't want our loved ones to suffer, but we also sometimes want to go curl up and hide under the bed like a child.
mommago,you are very right...some days you go from normal to below ground...especially when you have days of little sleep,best regards,Rollie
Keep strong for Madeline,I don't know what else to say to you,I'm the same I just feel helpless x
Yes it is normal, I nearly lost my mind with worry over mum before she was diagnosed as having always been a strong, dominant person she was still refusing to let me help her or follow any suggestions regarding her safety and I was worried sick. After my hand was forced and I had to have carers coming in it all got a lot easier to make her relatively safe and we were able to adjust her care as needs developed. Towards the end I began to get waves of this all encompassing worry and sadness again as it was so traumatic watching mum deteriorate and I saw a counsellor. However the whole time I was sitting there I was thinking what right have I got to feel sorry for myself when mum is the one suffering? A week after this I sat with the Hospice nurse and felt a huge weight coming off my shoulders as she talked and listened. She knew and understood my worries and was able to sort out all mum's medications and needs with the care staff so that mum was comfortable and settled for the first time for ages. Please see if there is anyone you can talk to. Perhaps your PSP advisor can put you in contact with someone? You have been doing this for a very long time-Mum's PSP lasted 6 years but was only middling into severe for the last 18 months so I can only imagine how you are feeling. Take care, Dianne xx
Your feelings are 100% natural - who wants to see anyone they love suffer ? When my father was in pain - I used to ask God to put him out of his agony - I would want that - no one would want to be in pain. Each breath is a marathon - swallowing is impossible - constant choking is terrifying - and being 100% helpless in these circumstances is cruelty at its worst.
As time passes, things only get worse - PSP is a horrible condition - its will strip any ounce of dignity and or ability a man has. In the end - I was relived. When he passed away - I was sad but also relived to know that my father was no longer in pain.
All this to say - Stay strong, your feelings come from a place of love.
Thank-you ,just to clarify a point as a Frenchman I still am not always clear,the reaper was for me....but I am with you on your thoughts.....no one deserves 10 years of this,best regards,Rollie...Happy Easter!!
Boinjour Rollie! No,No,No....Invite anyone in but not he....and anyway he'd take one look at you Rollie and fall madly in love!
How we all understand about a carers life, how tough it is .And folk like our Peter Mate hanging in their despite everything. And no treatment in sight. Live each day at a time as Jimbo says.
Then one day Rollie, you'll go to Madelins bedside like each day when you awake and she will be away to another planet where she has shrugged off this ghastly disease.Where it's unknown and she'll walk again, even run and smile.
It's often called 'a happy release'.
S I salute you Rollie along with all the unsung Heroes...everyone ,sufferers with PSP/CBD and their caring loving carers. I've been there done that. But for certain I'll never forgive PSP for invading our wonderful life
With you all in mind ,round Easter tide, best brian
.Hi Brian,as a frenchman I still mess-up on explanations,the reaper was for me not my wife,the photo is my wife,s photo,I agree,many have commented on this Irish girl in our 50 or so years together ,,,I also think exactly as you do,hopefully we will both be running freely in the next world,maybe,as my uncle once told me,life is a test for the calling you will have to qualify for in the next world,this is a voyage and not a destination,best to you both,Rollie and Madeline,the pretty one.
nomansland, I can see where this thought would be normal. I think in most diseases, even cancer, patients reach the point where the struggle is just too much for them. You often hear of cancer patients who just want to go home and not have chemotherapy. As the body parts go downhill thoughts of "what's the use" are easy to experience. It's tough to break the human spirit but a disease like PSP has that capability for sure. I do hope you will continue to fight. Please refuse to let PSP get the better of your spirit. Jimbo
Thank-you Jim,love at Easter,Rollie
I've had that feeling before.... Not unusual. My guy passed away and I miss him so very much.
Thank you for your note putting me straight ,Rollie. And Madeline is the beautiful Irish rose whom you married half a century ago. Diagnosed with PSP over ten years ago...and you've been lovingly caring for her for all this time.
Rollie you are a Saint Hero in disguise and my heart goes out to you both journeying down the PSP path together.
To me this means your neurologist was a highly trained medical professional. To have diagnosed PSP so long ago.
I just hope all our postings have given you some courage and that you know when things get tough for you...shout it out loud onto this forum. We hear you!
Please give Madeline a big hug from us all ,keep calm and carry on.A bientot!
With all carers and sufferers in mind, best ,brian in Provence.
Dear Nomansland,
I feel for you for it is so exhausting I stopped. No more. Far from ideal however the only way for my own sanity, Some are cut out to handle it,others not, For me I am trying to repair the home to sell to savage what little is left to move in another direction with our young daughter. Three days ago the police heard my husband with an impromptu visit he made and found out for themselves how destroying PSP can be. For them to openly recommend I withhold my new address shows how devastating and daunting the 'outside' community finds this callous disease. So my hat off to you for maintaining your strength and perseverance to date, It is an extremely difficult journey that in many respects can only be taken one day at a time.
Regards, Alana - Western Australia
Alana, I have never heard of anyone else with psp being as active and aggressive as your husband apparently is. Have you? (Aggressive, yes, but so "able" with it?) It's striking to me how this disease finds ways to make itself as awful as possible; sometimes it seems as if it's tailoring itself for the greatest possible harm for each individual. I always appreciate your posts here, so please know I'm wishing you and your daughter well as you try to move - which is one of life's ordeals in ideal circumstances. Please take care of yourself. Easterncedar
Dear Easterncedar,
Yes - For three other people, however for each it didn't continue for the same number of years(?). And diagnosis of PSP was not made so early, so their partners were not aware that the activities were likely to be related to PSP. The one aspect I felt each of the partners (carers) had in common was each felt and acted so guilty and sad with themselves for not recognizing there was a bigger picture (undiagnosed PSP) when their partners personality had substantially altered and wished they had followed up with doctors earlier. I on the other hand am recognizing that I have done an incredible amount of work for my husband (yes, I'm giving myself a pat on the back, and yes also know there is always more that could have been done ...)
N.B. A rewarding acknowledgement is what I think all those who read and use this site should give themselves more -- For its real, real damned hard work - to retain strength, dignity and self worth through what has and is happening with this dreaded disease...
Regards,
Alana - Western Australia
Hi Alana...remember you are the smaller side of the equation,Madeline could never do for me like I do for her...she is `100 pounds to my 180 so that alone puts you at a great disadvantage,you also have children at home.,mine are in their40,s,housework alone with this terrible illness is overwhelming...without looking after a family,.remember,this illness ,short of a cure will likely not improve,your duties as a mother with children weigh heavy on your care for them,don,t be too hard on yourself,hospitals are full of people who ,for many reasons,are not able to take the bull by the horns,let me know how you are making out,love and regards,.Rollie
Sharon, it is rough with a child to care for. My son experienced early pre PSP with my guy as well. All of the lovely, vicious angry rages and nasty personality changes. I am so sorry I put him through it. Ironic I left his father because we were arguing all the time and I did not want him to think that is how men and women related. He was exposed to so much worse. What is hard about all of this is justifying staying. Love does not seem to be a valid enough reason. When people say,"He is lucky to have someone like you", they say it in an incredulous fashion like I am an utter fool. Maybe I am. Maybe I will be. But for whatever reason I can't leave him. Your decision was not an easy one and I have tremendous respect for how brave you are and what a good mother as well. We are going to have to move soon and I am dreading it. I hope you find a safe haven to call home. Take care-JG
Hi Rollie, those feelings are perfectly normal for people like us trust me. I have been caring for mum for five years now and I have been through a whole raft of feelings and emotions, and beaten myself up in the process thinking I didn't have the right to feel like I did. Battled through the bad times and made the most of the better times (I won't say good times as there aren't any where PSP is concerned, well at least not in my experience anyway). Try to be at ease with yourself and take each day as it comes. It is a very steep learning curve and can only end one way but I know that your wife appreciates what you do for her and when she is in challenging/aggressive/nasty mode keep telling yourself she can't help it, it's not her it's that horrible disease.
God bless and my best wishes to you and your beautiful wife
Lizzie F
