where do you see yourselves: As a caregiver... - PSP Association

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where do you see yourselves

nomansland profile image

As a caregiver I have days that I,m in a deep hole with greased sides therefore unable to climb up !today was one,the medical field leaves it to you to make all the decisions. These days ,Madeline has a harder than normal time to breath,so you go with mist,puffers,avelox,atropine drops,tylenol with codine,which presents a problem re constipation,resulting in a few baths,and for the obvious reason Madeline does not want to go to the hospital,.the last time there I never left for 4 days as no one seemed to know what to ,do so I was still the caregiver! I have never heard of an illness such as this where not one day in the past years has shown any hope,I,m sure we,re all alike,maybe a group prayer by the believers to ask for a bit more support from God ,lord knows we need something,regards,Rollie

26 Replies

Hi Rollie, I'm with you in the prayer group. We carers, and our loved ones need all the help we can get. I've been my husband's constant carer and companion for 4 years now, only a fraction of what you have done, so you must be totally worn down and exhausted. Over the last 3 weeks my husband has taken a turn for the worst. He had 8 stitches removed from his head today, following a fall and yesterday he fell while I was transferring him from wheelchair to rise recliner. Only 3 weeks ago he was walking from the back door to his chair with my help and a walker. Now he has a job standing. I've asked the OT to call to advise what to do next; move his bed downstairs, use a hoist etc but from past experience, I think it will be me saying what I want, not her giving advice.

I feel better tonight as I've had 5 friends round here, sitting in the garden until 10.30 pm and laughing a lot. They are all widows who nursed their husbands through long illnesses so understand the pressures of daily living. Prayer and friends are what is keeping us going.

I do hope that hole is not so deep and is less greasy tomorrow.

Love and prayers

Nanna B

nomansland profile image
nomansland in reply to NannaB

Hi Nana...a few friends are what I miss,we had lived in Dartmouth nova scotia350 kl from here , from 1974 to 2006,our plans had always to come back to the old homestead to retire....we came but I just shifted jobs,instead of running a business I became sole caregiver without help from her 5 siblings that live in a 20 kl radius,a simple meal is all I would want on occasion but it would likely be a great imposition,looking at their size I,m sure they cook,ha !well Nana thanks for writing,b4 you get in the greased hole drop a ladder in,love and prayers to you both,Rollie

You certainly have my prayers. We have found it seems to split into two camps, those who will turn up and help and those who have run a mile and dont want to know. Most of my wife's family living not so far away, have run away. This illness is certainly an eye opener. Do you not have crossroads or a similar charity who will help to give if onyl a 30 min break.

Best wishes as always


nomansland profile image
nomansland in reply to

jmbb,thank-you for your thoughts,I see where I,m not alone with family support....it,s hard to understand but at least when I shave I recognise the man in the mirror...I wonder if those people do,thanks for your support,Rollie

in reply to nomansland

Just to say we were also 18 when we met. I have the pictures as well. there are good times

best wishes


Same boat Rollie, Hubby has the quick type of psp but was young when he was diagnosed. We did the same as you built a home and planned our future... not well enough i guess and this is hubby's final year according to the specialists predictions? their has been times of soul searching about nursing homes as my back is so bad now it's in constant pain now spreading to the hips big time, but i hate nursing homes and no one would be there to open his mouth so he could breath properly, as he can only swallow with suction by breathing through his mouth and nose together. If i had my time again i would have found the best nursing home and got him a place in the first 2 years, then they would have known how he was normally and adjusted to his decline, now i just couldnt do it unless my life depended on it.

It's a roller coaster of emotions coming and going along with his good and bad days, not sleeping thinking he will pass away only to find the next day he's much better, really he is just skin and bones, hasn't talked for years and friends well you can forget that they pop in every year or so to see if he is still alive, Children well they are adults and he is lucky if he gets a hello, because lets face it he cant answer back so end of conversation as far as they or anyone else is concerned. All i hope for him is it will be quick and painless, i get much more help for him now from the neurological/MS society, but we live in Australia not sure where you are? Try get shower assist, you should be getting that along with your respite. I'm afraid it's a carer/ partner that suffers in the mind and body the most with PSP . Drop me a private message if you need to know anything. good luck.

nomansland profile image
nomansland in reply to mummybear

mummybear,if I wrote my experience down it could well be your letter,I guess our promise .in sickness and in health,meant what we said...we live in Nova Scotia Canada. I love your directness about life,you certainly seem to have life walking behind you and not the other way where life tows one by the neck, I,like you am to the point where jt,s much too late to make any changes,Madeline and I were each other,s company both in business and in life outside,I would have walked a mile on hot coals to see her,I keep many pictures of our life together on the fridge etc as some days I get lost and really have to concentrate on who she really is...the worst part is loss of speech.I do get nurses 3 times weekly for 3 to 4 hours so as to go run erands,they renew my belief in humanity each time,I get everything done b4 they come so they can sit and read to her .Funny thing life is ,as I showered her the other day I thought of the many times I dreamt of doing just that...we were 18!...how does one send a direct message on this site ?Well another day,stay strong,love,Rollie

nomansland profile image
nomansland in reply to mummybear

I had lost your mail and wanted to ask ,how can you get your husband,s mouth open to be able to assist his breathing ? I had the ambulance in a few hours ago as Madeline was struggling to get enough air,I suspected her O2 which turned out to be ok..let me know,thanks,Rollie

in reply to nomansland

Could you buy an oximeter through Amazon. It sits on the finger, run by batteries it measures oxygen in venous blood and heart rate. Ecah individual is different and their norms different but a rule of thumb is oxygen sats less than 80% needs immediate attention. Ca £20


It will help you know when to act

best wishes


nomansland profile image
nomansland in reply to

That sounds great,another item that will help greatly along this journey thank-you Rollie

in reply to nomansland

No worries keep going


mummybear profile image
mummybear in reply to nomansland

Hi Rollie, i stick my finger into the side of his mouth like a fish hook, not nice but he is sucking that hard it catapults the food and air to the back of his mouth, dangerous i know! but it is the only thing that works. As for breathing by himself he has to do that on his own and has shallow breathing but he stated he didn't want assistance with breathing, and in my mind who would with this disease? Unfortunately it's hard for all concerned to let go, especially for me as i think after all these years it's the only thing i know. Be kind to yourself and Madeline and remember you cannot live her life for her, i have realized that no one anywhere in the world would do what i do for Hubby and have now started to relax a bit and moved into a spare room with a baby monitor so i can try and get some sleep, also not to be by his side every second of the day as this is impossible. There have been days i haven't ate, showered or cleaned my teeth and that is just silly!

nomansland profile image
nomansland in reply to mummybear

Thanks my dear...I appreciate the information...as you,most days are hour to hour,no plan,no action for myself and very poor self care donuts and anything quick to eat does not for a good life make,especially with a heath valve that was supposed to last 7 years turned 14 this year,oh well,another 2 cups of coffee,a talk with the boss,GOD,and I will get on the way,love,ps...you also, take care of yourself!..Rollie

Dear Rollie

The job of a carer for a loved one is probably, on the one hand, the hardest job of all, but on the other hand, when it has been a good day, there's a different feeling and when all is well you should give yourself a hug because you have made that difference.

Back in the day when I was a new mum, I was always told if you can do something sitting down, then sit, if you can do something laying down, then do it. In other words, take every opportunity you can to be kind to yourself.

I came to the conclusion a long time ago that the medical profession are helpless in the face of PSP, it is not their fault. Every pill or potion of whatever type just seemed to me to make Harry more agitated or more disturbed or more distressed and had no real affect on his overall condition, so I stopped them and he generally returned to a more calmer state.

Having the help of our wonderful carers each day made our lives bearable, I was able to get out and do the normal things, shopping etc and Harry had the benefit of their care and company.

Take care of yourself and kind regards

Dorothy T

Always nice to hear from you Dorothy,at this stage how are YOU making out,I agree...pills are more often a miss than a hit,thank-you for writing,best regards,Rollie

Hi Rollie

I am ok thank you.

It was Harry's funeral yesterday and we gave him a send off befitting him as he was in life, joyous, friendly, happy and somber moments, surrounded by his loving family and friends, with many happy memories.

Kind regards

Dorothy t

Dot,I,m not sure what to say....just try to adjust to the new life with the real Harry in your mind and by your side,Rollie

dear Dorothy

i am glad that you got thro the funeral ok

Ha d harry planned it or was it something else which you had to do/

my partner will not talk about such thing sas it upsets him so i shall put in writing what i should like to happen and hope that it does..

no way of telling what he will take on board at all, assuming that i do go 1st!

;lol JIll

w ea re having a hymnathon in November (100 HYMNS NON STOP) and it will partly b 4 CHOIR funds and partly for PSPA

as ROLLIE has commented on the site "what a good thing to do to sing for PSP!"

Hi Jill

No, the family made all the arrangements, invitations, order of service, choosing the music, it is quite a task because each of us have and had our own memories of Harry.

Love and peace Jill

Kind regards

Dorothy T

Dorothy t, . Nice to see you posting again on this site . Hope you are well.

Rollie, Group prayer, great idea. Although my dear Sharyn has passed on from PSP I am on a mission to help as many others as possible. I'll certainly pray for all those with PSP and the caregivers in particular. I've stopped this email to lift up prayers for caregivers.

I hope my prayer will send relief to all the caregivers out there. I once asked my pastor "what would say if you prayed for healing for a person and they didn't get healed?". He responded "Next". Stay strong all you caregivers out there. The family and friends are watching to see how you are handling the situation so be an example of how to do it with grace. Hard to do but keep reminding yourself "I can do this and survive". Jimbo

Thank-you Jim...it,s likely as much for the caregiver as for the patient,best wishes to you and the boys,Rollie




nomansland profile image
nomansland in reply to jillannf6

That,s it Jill...love says it all,thanks love ,Rollie

Hello Rollie

Just read all the messages. I hope that you have found a ladder to climb out of this greasy PSP hole. Always remember we are all here to listen and we all know what each has to deal with on a daily basis.

It was certainly an eye opener to find out who our real friends were. We had a lot of sincere offers of help from neighbours we only casually new. So called good old friends have kept away. All his relatives live abroad, thank god! Our children are a great support, although they don't live nearby and have busy lives, help is always at hand, always with a smile and good humor.

Rollie, I hope you are feeling better now.

Love maddy

nomansland profile image
nomansland in reply to MaddyS

Thank-you Madeline...just the name attached to a person without psp themselves makes me feel better.,I guess we,re all in the same boat,have a good one,and thank-you,love,Rollie

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