Of taking that person to the toilet fails to get results despite every trick in the book to help with constipation. How do we keep our sanity when for the umpteenth time that person removes his conveen at night and saturates the bed. How do we keep our sanity when there is the constant "dripping tap" of demands. How do we keep our sanity when Nothing we do or say is right. How do we keep our sanity when we are being undermined all the time in our efforts to just keep going?
I KNOW that that person cannot help himself but I am exhausted with all the strain and I just want it to stop.
Dorothy T
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dorothy-thompson
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My exact words this morning, " I just want this to stop". And when it does, I will no doubt feel very guilty but when mental and physical exhaustion take over we can't help how we feel can we. I feel better now than I did this morning as this evening I booked Colin into a care home for a week near to where our son lives so I can stay with our son and take Colin out during the day but have him looked after at night. It gives me something to look forward to and Colin knows he can't sleep at our son's, stairs etc. so hasn't objected as it's the only way we will see our grandson in the near future.
My two beautiful daughters-in -law have booked me in for a week-end in York soon, my husband will be taken care of by a combination of our carer and our two sons. I have gone through every possible scenario of what could possible go wrong, have given myself a good talking to to the effect that it will be "alright on the night" and am really looking forward to it.
I have considered longer respite care but the cost it too prohibitive but if the week end proves successful, I shall look at it again.
Oh I'm so glad you daughters-in-law are looking out for you, and that your sons will be helping with their father.I hope you get a wonderful rest, Dorothy. You deserve all that and more.
I'm so pleased you are going away Dorothy and hope you can relax and not worry about what is going on at home. The week is costing me £795 which is a lot but not as much As I paid for a self catering house for both of us last year. It was fully adapted but I still had to do the 24 hour care so was exhausted at the end. Now I can stay with my son and his family so will only have to pay for Colin. Last year I said I wasn't going away again as it was too much effort but hope this way it will be easier once I've driven the 3 and a half hours to get there.
Wow, where in the UK do you live because that sounds like a fantastic deal. I have only tentatively looked at one nursing home and the cost would have been around £1,400 for the week. Is your husband going into a care home without nursing?
I live in Kent but the care home is in Suffolk, where our son lives. He was recently taken into a care home as an emergency as I hurt my back and couldn't moved. That was £800 but I am so fortunate as he gets NHS continuing care so didn't have to pay. I will have to pay in Suffolk as funds aren't transferred between counties. It is a full nursing home. At the moment I get night sitters 5 nights a week as he doesn't sleep, wanders and falls. From January I've had sitters during the day, for 3 hours twice a week. They come from an organisation called Crossroads which is nationwide. They don't charge anyone but the sitters are trained, paid carers. It has made so much difference knowing I can get out and meet friends, shop or go and sit in a garden centre with a coffee and relax. Do you get any respite during the week? Colin did go to our Hospice day centre every Friday until last week but doesn't want to go any more as he can't join in anything and no one can understand him. If I didn't have Crossroads now I think I'd crack up so if they operate in your area, it's worth trying them.
I have a wonderful carer from crossroads. She comes Friday afternoon to sit with hubby, giving me some time to go out. However, we have to pay, how did you manage to get yours free?
When I asked about payment I was told Crossroads is a not for profit charity and no payment is required. I have said I would like to contribute and was told they will send a leaflet with information but they never sent it.
Enjoy your time away. Hubby will be fine, promise not to think of him when away!
Hi Dorothy and Nanna B
I can appreciate your need to have a break from caring 24/7. I can often give advice to others about the need for a break for the sake of sanity and general health, yet I've been slow to take my own advice! This week I have organised my wife to have a "respite" stay in a nursing home. It's half way through the week now, and I'm already feeling the benefit. I decided NOT to visit her because of my tendency to think the carers are not "to my standards".
This is probably irrational, but I worry a lot!
I don't know the systems for respite in other countries, but since my wife holds a pension card she can have this respite care for about $A48 per day (about $USA43 and 27 UK pounds). This is really good, and if someone could prove financial hardships, then they could have the respite time free.
I know some of you as carers have loved ones that present with a lot more problems than others. Sometimes, because of these problems and not having the physical strength (or emotional) to cope, then a full time nursing home will be the solution. This may be such a difficult choice, because it is often accompanied by a lot of guilt. For those (like me) who want to keep their loved one at home for the duration of the disease, then regular respite times are essential. I have recently been less than tolerant with my wife on a couple of occasions, and the warning lights went on in my head. I HAD to have this break, and perhaps she needed a break from me!!!
I know when she returns next week it all starts again, but at least I have experimented with "respite time-out" and will use it again in the future.
I do wish you well in looking for ways to take some of the stress out of caring 24/7.
I hope to keep my husband at home and agree carers must have respite. When Colin stayed in a home recently when my back " went" (not a medical term I know), I did visit him as it was only a 5 minute walk away and walking helped my back, but I, like you, felt he would have been better looked after at home but he survived. It was quite hard starting all over again on his return but we soon got back into the same routine.
My husband is not apparently eligible for NHS healthcare as he didn't score sufficiently high enough in all the domains. He was assessed last August by a district nurse and I still cannot understand how she came to her conclusions, one of which seemed to be the fact the he could recognise a pen therefore he had no cognition problems I think.
The nursing home I spoke about gave one of their PEG feeding as one of their criteria. My husband has refused that and at the moment he does not need it, ironic that isn't it.
I do get respite care, 4 hours daily, which is paid for in part by ourselves in part by direct payments from social services.
But, and I know this probably sounds selfish and somewhat strange, I am 73 years old and there is only so many times one can go shopping, or have coffee with friends or visit family or do a class, I want to be able to stay in my own home, or sit in my own garden or simply be just "me". I have been a "carer" of some sort or another, wife, mother, grandmother, for over 50 years and enough is enough.
Dorothy we seem to be in the same situation . Like you my husband andI cared for both our parents until the very end when unfortunately we found we were in the same supination with John having Parkinson's . It isn't fair is it , WITH A STAMP OF THE FEET LOL....
we also have Been refused continuing funding . Well it's is continuing for us .
The only time I have had a break is when he went into hospital for a knee op , although tiring back and fore to the hospital I did have a few hours to myself , stayed with our daughter who cooked my meals as well . It was a little respite .
I want to keep my husband at home for as Long as possible
I have signed up with crossroads but so far not used them I manage myself at night . Luckily he generally sleeps ok .
I keep a baby monitor at his bedside with a remote doorbell he sleeps downstairs .
I am not sure how hands on the crossroads people and my husband prefers to stay on his own so I only go out for no more than three hours , usually stay about two hours . even that is good for me .
My husband doesn't appear to have a dementia problem but is very slow un co ordinate on times .
Hi Dorothy, I'm right behind you there - having to vacate your home in favour of shopping, coffee breaks etc. is not a treat or a rest. I just want to be able to have complete control of my home to do as I like for a while - I can see you feel the same and that is the one thing we can't have! The only thing I can say is keep at your GP until he refers your husband to a hospice, Tom is in a similar state to your husband and was taken on 2 years ago, resulting on one 4-day holiday for him and 2 x 1 week long stays at their hospice so that I could get respite. Also offered massage session, counselling and courses on how to cope and facing the future. It was hugely helpful to me and it also followed up with a day a week daycare which he would never have considered before.
Do not take no for an answer, hospices are accepting PSP as a terminal illness and for him to get any benefit he needs to do it while he can still get some value out of it.
My husband was also taken on by hospice (I am in the US) several months back. It has been wonderful because he gets visits from so many different people: he has a nurse, a social worker, a chaplain, a music therapist and a volunteer. They are his life! The first time hospice came out to assess him, they did not accept him. But they came back a month later and took him into their program. I think they needed to do some research on PSP. A hospice medical director at another hospice in New England made this comment and I quote, "a PSP patient will always qualify for hospice and will always outlive his prognosis." But hospice care in the US does not end. Please try to get your husband accepted by your hospice.
I know what you mean about finding something to do when the sitter arrives and wanting your home to yourself. Today I was offered extra hours and didn't want to turn them down. I had things planned for the 3 expected hours ( went to the tip with a car load of junk from my late dad's house, very exciting) but didn't know what to do for the extra hours. So I went home and told the sitter I was going upstairs if I was needed. I tidied up, sorted out and then had a nap and I didn't have to stop for numerous toilet trips and other things that usually interrupts whatever I'm doing. So now I've decided not to go out every time and if it is warm enough, will do a bit of tidying in the garden next time.
I know many people have replied to you and I think we can all empathise with you. My husband is at a similar stage as your husband, but has gone past the aggressive, wandering around period, in fact he can hardly move on his own these days and has become very quiet.
I had the same problem with the use of a conveen Peter just kept pulling it off and we had urine everywhere. It took sometime to get the incontinence sorted. Currently he just has pads and this seems far more acceptable to him. It does create more work.
With continuing health care funding. When you have a review try thinking about how your husband would be if he was left on his own for 24 hours with no care. Would he drink anything, have food, get to the toilet, would he injure himself by falling, would he be able to make rational decisions for his own welfare, can he administer his own medication?
I apologise if I'm teaching you to "suck eggs" but the above is how I prepared for my husband's assessment. It also was very sobering for me to realise how he was dependent on me literally for everything. He got funding last September and it has helped so much.
Strelly, Good you have a chance to get a break. I'm not at that point yet but I'm sure one day I will be. Sharyn and I do have our "moments" if you know what I mean. Had to use the Hoyer lift one day this week which didn't please me much. I can relate to the retrospect of feeling bad after bitching (excuse the language) at Sharyn or about some aspect of caregiver duties. lol
As I read your comments this morning it was a relief to think I am not the only one who is frustrated with the constant repetition of the daily demands. Your "dripping tap" comparison was spot on
I say it's like getting on and of the roundabout . You jump off to make a cup f tea get called back jump on again and then forget you were making the tea , will get the cleaner out . lol and so on . I am 77.
This is just a P:S to Dorothy ,Tony ,Nanna, and all the Forum Heroes who've given their gracious support to Dorothy's dramatic situation...that she's now got under control.
You are so right to want to,must have, got to,...have a break. There must be no feeling of guilt. Carer Sanity is at stake here.
A tiny word of advice--that took me too long to sink in---two of our daughters ,nurses, always said I was at least one or two steps behind in my caring for my bride. Perhaps like Tony I was fit ,strong and well enough to cope. That's what I thought!
By that I mean I was still getting Jo up in the morning and giving her a shower when I SHOULD haver had a local nurse come in to to that.
I was putting her to bed at night when I SHOULD have had the same nurse do it.
Getting up 4-5 times in the night for whatever reason.
And like a lot of you carers it was 24/7 deal. With no let up and as the demands got more and more, again like you all....it became a question of...I can't go on...and the alarm bells started ringing.I'd awakened!
I hasten to add that I'd made a pact with Jo as soon as PSP was diagnosed that she would stay at home till the end.
First, I arranged nursing help morning and night. Then I hired in a qualified carer to come every afternoon after I'd cooked and fed Jo. She looked after the dishes and kept the home ship-shape for me.
So I was able to take most afternoons off.....just to go shopping...but at least I kept my sanity as her primary carer.
The moral of this story is....PLEASE ,PLEASE all you Forum Heroes Wake up, take stock of what you shouldn't be doing. Get that help...NOW....and stay alive!
How right you are and I was thinking exactly the same only yesterday and as if to reinforce my resolve, our care manager called in on the off-chance today to suggest the same thing.
As a result I intend to arrange extra personal care hours for my husband which will take the burden from me in the mornings. If this proves successful, I shall look into getting the same care for the evening.
I shall still keep my sitting- service hour so that I can have my time.
Thank you all for your input, it has been so good to talk as Easterncedar so rightly says.
Oh Brian how right you are. I too fell into the trap of thinking only I could provide the care my husband needed. I had not realised how tired and exhausted I was becoming. It was only friends asking me if I had thought about getting help. Initially I paid for a sitter for one afternoon a week and very quickly realised the difference the break made to both our lives.
Peter now has care everyday in the morning and is about to start having care at bed time.
There are times I wish this was all over and like others feel so guilty for having such thoughts and ask myself what kind of person am I who can have such thoughts? This forum plays such an important role in maintaining sanity, knowing there are others going through this most unwanted journey in the world as well.
Dorothy, Your original post has resulted in such a wonderful conversation here. Thank you, and thanks to everyone who has contributed. Wow, does it take the edge off the isolation to know you're all out there, caring. Thanks especially to the psp sufferers who are here sharing their perspective, too. So much courage all around. EC
POOR DOROTHY - I DO FEEL FOR YOU SO MUCH - IT MUST BE DREADFUL - I AM THE ONE WITH PSP AND I AM VERY CONSIOUS OF NOT DEMANDING THINGS FROM MY DARLING HUSBAND WHO IS JUST SO SWEET AND PATIENT WITH EVERYTHING HE HAS TO DO FIR ME - ARE YOU GETTING ANY RESPITE YOURSELF ?
Dorothy, have you tried laxative suppositories? They work as a last resort for us. Also a bowel softener given three times a day can help. Just keep trying things and you will find a solution. Water resistant pads for the bed work so mattress stays safe but sheets still need washing. Hang in there, we all get to that point during our struggle with PSP. I often wonder how I make it through the trials but later that day, or the next, I've survived. You will also. Jimbo hugs!
I really feel for you. I think your feelings resonate with so many carers who feel alone, shattered, desperate, helpless, guilty, resentful and deeply sad that their loved ones have to go through such a terrible time with this disease. My Mum has reached breaking point - seems that's the only way to get help sometimes and now all actions being taken to get Dad into a home. Carers just keep going and going and going and then snap. Knowing about Carer Support Groups, this site, Crossroads and other organisations is a life-line (just too busy with caring that not able to reach out before - catch 22 - found out too late that actually there is support out there). Respite - help at home - talking to others - all vital for recharging the batteries and then being able to be a better carer to our loved ones (before resentment, exhaustion, illness and worse hit you). I do hope you get a break and get help soon - you've earned it! Wishing you all courage, patience and good health to have the strength you need also for the journey ahead. Tania
Dear All,
Today I have been reading all your stories and actually, I do not think there is an answer to your/our predicament.
My father died last Friday morning and I struggled and struggled for years, not with poor Dad but also with my Mother, she had Altzheimers. Also, like some of you I have been minding husbands and children for forty five years. In fact now, I do not know who I really am or what I really like or what I would like to do with the rest of my life.
My children keep saying to me ' Well Mum, what would you really like to do?' and frankly, I haven't a clue!
The experience with PSP has been traumatizing , not only for my father but for me. What my father suffered , no one should have to experience. He died of starvation and pneumoinia and he died in pain. I had to threaten the staff on the hospital ward that either they would find a doctor form somewhere in the hospital to give him morphine or I would take him down to A&E or I would put a pillow over his head. I had pleaded with the hospice to take him, they would not. We had said 'No resuscitation', they tried to 'bring him round' twice. He was 97, it was absolutely pointless and down right cruel. So, you dear people who are keeping their loved ones at home, I think you are doing the right thing. I just could not as I had two of them in my front room in hospital beds; but even with continuing care funding and nursing home care, there was no peace of mind. I think I am a bit like Strelley, I was just never satisfied with the level of care and I think with PSP it really does have to be almost 'tailor made' as everyone is so different and it is key to keep that relationship, that personal and intimate relationship intact with the sufferer otherwise they slip away even faster and probably feeling abandoned in their most needy time.
All I can say is that I would never have abandoned my father and he knew me until the end and I would do it all over again. As I recover from it all, I know that there was nothing more I could have done, I visited him every day for six years excepting a few weeks off for the first four and a half years. This past eighteen months I have visited every day and sometimes twice. But I could not save him or help him; only look on in despair and dread. I seem to have been dealing with ignorant and incompetent medics and carers for most of the time. The hospital staff could not even let me know that he was actually dying until it was too late for me to get there in time.
So I do not think you can win. It is basically trying to come to terms with acceptance of the journey and just doing one's best and if you are lucky, you will get comfort from the odd kind word or deed from someone, but in the main, you are on your own. I think even with friends I was difficult company as all I could talk and think about was the state of my father and what was our next step or phase and they could not understand or help me. I protected my children as much as I could; no need for them to watch it all.
One really good thing is that I have successfully managed to get Dad's brain and spinal cord to the brain bank, something that I know he really wanted, and let us hope he will contribute in some small way to finding a cure or a more satisfactory way of dealing with the disease
I think that just by grumbling and 'venting' to each other on this site is about the best help ever. Thank you all so much for your contributions. Be happy for me that Dad is now at peace, out of harm's way and that I can sit, stunned and shattered, in my kitchen and try to heal. I am now able to watch a complete film or program in it's entirety without having to make pureed food (some special treat, like fruit that he liked) and 'run' to a hospital or care home any more to check that Dad is at least sitting or lying in a clean bed and he is being fed with a teaspoon and not a dessert spoon, in a desperate effort to prevent aspiration pneumonia and that some carer has not left him listening to pop/rubbish music when he liked classical music, just because they could not be bothered to press the correct button on the radio. Dad's cremation has been arranged and today I went with my daughter to clear out his room in the nursing home. Thank goodness I never have to go there again. I am free at last! I smiled at the posting on Cannabidiol,, Dad's last consultant in the hospital had never even heard of it and when she asked at the hospital pharmacy they said that it had not been passed by the hospital committee to keep it for issue even though they brought a specialist MS consultant to see Dad and of course, it has been issued for years for that condition! So what kind of options are being offered to MS sufferers in that hospital? Obviously not the most comprehensive, I expect they would have to leave the NHS and go privately! What a crazy world I have found myself in
My father's name was James Henry Perry. Poor darling, what a sad ending he endured..
You have hit the nail on the head! I am just so exhausted. I have been getting up at 2pm in the afternoon and still when I catch sight of myself in a mirror in a shop or whatever, I look like a ghost. Yes, I think you a right, about a year's rest will make a difference. Thank you for that as it has given me something to work towards and look forward to and to give myself a chance. X
Dear Mo, I forgot to say that I had a letter from the brain bank today thanking me for 'the priceless gift', and I thought 'How kind and how true', and it made me feel good.
You end to find help to give you a break. It's like dealing with a crying baby. Sometimes I had to leave my baby I. Her crib and close the door for 10 minutes. It's the same feeling because the Psp patient can be so demanding. Try to find time for yourself, even if it's just to take. 5 minute walk around the yard.
I don't know, I also have been wondering how to keep my sanity! My husband has become (or it appears to be) obsessive compulsive, regardless of consequences to himself. It seems he doesn't care or is unaware of how his behavior affects anyone else. He gets mad at me for "nagging", more like me freaking out because he's always putting himself in danger. Some of his behaviors have been quite strange...he took apart the sandwich maker last week to clean it...WHAT!! who does that, no one. He worked on it from 1:00 in the afternoon until 10:00 at night, then again all the next morning. he got it back together, I haven't plugged it in to see if it works. A couple of evenings ago, he went out to the dumpster (not sure if he took out the garbage or what). Anyway, I've been folling after him like he was a toddler because of all the falls and such, I decided to give him some space and let him tinker. At this point, I didn't know he was out at the dumpster, after a while I went to check on him. I finally found him IN the dumpster!! Not only was he in there, he had been dumpster diving, picking out a bunch of crap (like I don't have enough of my own junk). Somehow, he had hauled a little step ladder out there, had a flashlight, and of course fell in. My daughter had to climb right in so we could get him out. Even that didn't deter him from going out and chipping ice off the back walk, or from messing around in the garage. My back is sore from hoising him up all the time, and my nerves are rattled. I am afraid one of these times I will come home from work to find him in a heap with broken bones, or in a pool of blood. I feel like I'm on high alert all the time, he won't listen to me when I ask him to stay safe and not put himself in jeopordy. I haven't been able to go to bed at a proper time for months, maybe a year. I am up at least once during the night. I am physically, mentally and emotionally exhausted, and he doesn't seem to get it. I feel somewhat abused, more than taken for granted thats for sure.
Anyway, I have applied for residence in a care facility, waiting to get through all the red tape. It is quite pricey, and he is only 57 so has no old age pension.
SORRY for ranting and venting...I GET IT!!!
Maybe you need to see if you can get your husband into a care facility, take the load off you and regain your sanity.
Hi Dorothy, I hope things level out a bit for you soon. You must be under so much pressure at times. You mentioned in one of your posts about funding of respite and how difficult it can be. For people in the UK there is a charity called the Respite Association, which can supply some funding towards respite so that you can take a break. I believe they also have a caravan in Skegness that they loan out free of charge. If you have internet access have a look at respiteassociation.org/
And if you ever feel that you just need to talk and get things off your chest then you could call the PSP Association Helpline for a chat on Tel 0300 0110122.
Feel better, Dorothy
Best wishes
EB X
Just remember that with PSP nothing lasts for ever and these are all phases. Believe me, eventually it will all stop and you will actually miss it as it's their independence calling out!
my husband diagnosed with parkinsons 4 years sees consultant 6 monthly for poss six minutes staggers backwards eyes shut most of the time .just had a good cry ,it helps.incontinent of urine up to 3 times nightly.cannot find timefor any thing unless it,s to do with my husbands care he,s just shouted need a drink I,m lonely.been asleep all day apart from eating meals neck on one side mouth open and drooling all these symptoms have got worse in such a short time.had to fight for second opinion.also if left alone for 1 hour finds strength to come down stairs and eat anything sweet.it would be more accurate to say every thing in sight celebrations,3 kit kats,two of my grandchildrens fav ice creams and I only went to the tip .diet cotrolled diabetic gone out the window hides sweets in with his nightpads. and you folks are all out there helping each other .just sharing helps and of course as for mentioned a good skrike.
"helpus"................Sounds like you need a lot of support - right NOW! Please let this forum know where you live and others will give advice about where you can go for help (like the PSP organisation or your local Parkinson's association). We will look out for more information from you.
Take care and remember there are lots of people on this sight who want to assist you in as many ways as possible.
T.
Dear helpus,
In support of what Strelley says above, If you are in the UK please do give us a call here at the helpline on 0300 0110122, or email us your telephone number and we will call you. Our email address is helpline@pspassociation.org.uk
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