I've been thinking, guilty thoughts, about getting so angry at Bob right now today. He can really drive me crazy with his following me around the house, on my heels, so when I suddenly turn around he is there shuffling after me talking and asking questions over and over again and not understanding anything I say. "What?" "What"? "what? "what? " what?" continually and "let's leave now" "OK let's leave now" and "What are we going to do? And "Hello?" "I need help!!!!!" shouting somewhere in the house if he loses sight of me "Is anybody here?" I know this is real panic and I also know I have real anger after awhile. So today instead of either screaming ( it happens a lot these days), and later feeling sooooo guilty. I tried to just tell him the truth. He listened and I think he was better after our "talk" or at least I felt better telling him how exhausted and irritable I felt, that I had a cold and really was angry with him for not leaving me alone. I told him that we are in this TOGETHER and that we both are suffering this disease and we both will get through this together but right now I am soooooooo irritable I maybe will scream unless he leaves me alone now.
I think that by my being real about my feelings rather than trying to be some fantasized, cheery, well- groomed, 1950's version of a wife, or nun, or paid nurse, that I am giving him back his person-hood. I am treating him like the man he was rather than the patient he has become and our relationship as husband and wife with all the real tensions and arguments that go with it.
Is this OK? Or am I just rationalizing my weaknesses? "Trying to excuse my outbursts in some fancy way?" He has left me alone now while I write this...A first.
Jill
Costa Rica
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Sandra cannot follow me around as she has lost motor functions except one hand .. but she calls me all the time from her hospital bed at home and panics over three or four things at the same time. I too feel guilt through my irritation and exhaustion and Sandra's irrational behaviour .. largely over the e-cigarette which she craves but is finding increasingly difficult to handle with her one 'good ' hand... She refuses to have a lanyard round her neck which would keep the e-cigarette accessible.. .. Goodness knows what will happen when she loses the ability to hold her e-cig to her lips.. Nevertheless despite all the frustration pain and despair, every night Sandra tells me she loves me and thanks me for what I do for her . It makes it all worthwhile Graham (Odiham)
Oh Jill, You have described EXACTLY how I feel!!! I don't have the following around, I just get the sitting in the chair, waiting for me to wait on him, hand, foot and finger! What I am getting is a HUGE resentment aimed at me. Treating me like something the dog dragged in, then rejected! I am soooooo fed up with it, I don't know what to do! Tried the "talk" that was three days ago, still waiting for an answer, was told at the time to stop rushing him to think. I know it's hard for him, for both of us, but it's not my fault! I know I was the one that kept on at the doctors, made him go, when he thought he was fine, but it's still not my fault! I don't want the earth, just to be accepted as a human being would be nice!!!
God, I hate this disease, who ever invented it, certainly saw me coming!
Neither of us are being weak, just sooooo tired, needing someone to do something, don't know what, just anything that would help, even for only a few minutes!
Thank goodness for this site, to know I am not the only one feeling as I do, makes me feel that I haven't gone mad. I think the main thing we have to remember, we are married to a man and they are NEVER going to change their spots, with or without PSP!!!
Oh Heady, This is so impossible and hard. I think that I cannot imagine how to once again pull myself together and face the day. It really is a god-send to know you are suffering what I am and I an not weak and trying to get out of something that I have to do.
Oh yes, the anger is real enough,there is no logic to what my husband might ask so when we were eating last night and he asked me for something I assumed it might be food or drink related as I couldn't understand him.In fact he wanted me to charge up his camera battery.Equally frustrating when trying to park he will ask if I have forgotten how to make choux pastry as he hasn't seen any for a while.His mind is never on the present moment,and his voice is so tiny and guessing is impossible he sometimes remembers the speech therapist's guidance and then I usually get it second or third attempt.He finds talking so much hard work and have to repeat himself is frustrating for him and for me. He also checks up on me like I am going to pinch the change from a fiver it is his worry that he is vulnerable I guess.
Not hearing correctly I now tell him what it sounded like which gives us both a laugh on a good day.I did go for a hearing test thinking it was my old ears but my hearing is not bad and the young doctor often looks to me for a translation!
Wishing us all a day with more love than anger P xx
I think the communication is totally gone where it is my ears or his brain. It is all scrambled and so frustrating and enraging. He keeps telling me to talk louder he can't hear me. But I am screaming the question and I know it is not that he can't hear but just doesn't understand the words. There was this enraging article on the Alzheimer's stupid website about how we should communicate BODY LANGUAGE...now Bob has not understood gestures (pointing, motioning etc.) for a couple of years. Do these people who write helpful articles know anything? Do they know what it is like to live 24 hrs a day forever with someone ill in the brain?
Jill, I think being followed around and being asked questions constantly would try anyone's patience. I never had to put up with that but when my husband was no longer able to stand alone, he would constantly ring the remote door bell I gave him to call me. How I was tempted to take it away! I lost it many times and then felt very guilty afterwards. Like you, I decided to discuss my feelings and he said he was scared when he couldn't hear me and didn't know where I was. He was scared I'd fall in the garden and no one would know I was there and he couldn't do anything about it. I could say I reassured him and he didn't ring needlessly again; no such luck. I still silently screamed and spoke to him through clenched teeth but didn't feel so guilty as I didn't shout at him once I knew why he was doing it. He doesn't ring any more, although the bell is near him, but I can see when he is agitated on the monitor so go to him. I do get very annoyed and have a job to hide my feelings when he removes his convene in bed at night ( I had to strip the bed and shower him at 3 am on Saturday night) and I never manage to eat a meal without at least four interruptions. Or should I say, a meal at home as now, to keep my sanity, I eat lunch out at least once a week when the sitter comes. We won't be going on any more holidays so the money I would spend on them will buy quite a few lunches.
Do you get time out alone? Last week, because of appointments, I had to cancel my 2 sitters. By the end of the week I had had enough and had a stop the world I want to get off moment. Yesterday I took myself to the local garden centre, took my book to read whilst waiting for lunch and chilled out. I know it won't take much for me to snap again but my alone times are wonderful.
Sending you a big virtual hug. As well as group hugs, perhaps we should have group screams as well.
YES YES YES YES my experience exactly. I thought this morning I was going to be able to tolerate another day but your note helped more than you could know. I is an impossible situation and doubly impossible to do alone. Thank you,
I APPRECIATE YOUR CONCERNS A BOUT HTE VOCAL CHORDS = - I CANNOTTAKE DEEP BREATHS ANY MORE AND HTE THOUGHT FO SINGING 100 HMNS (3 VERSES EACA COOL CHURHC DOE S NORT OVERAWE M E BUT WE SHALL DO IT
AND THE COMMUNITY MATRON SAYS I HAVE GOT THE CHC - GRFAT NEWS - iT HAS JUST TO B APPROVED BY TH E PANEL ON MONDA!Y SO THAT WILL EASE THE PROBLEMS 4 ME ( IF NOT MY PARTNER)
In a perverse way its so good to know that the symptoms of the illness are to blame and its not just oneself that is being brutally victimised! It took me a long time to realise this because when Tom was in the earlier stages of the illness this website did not exist. And a strong personality will persist through the illness - Tom is still convinced his way-off perception of things is totally right and everybody else is wrong.
Fortunately I have learnt that the more angry I became, the angrier he got, and no, he would never see my side of the story. Anyway, once he really was in unsafe territory I finally put my foot down and said from now on life is going to be what I can cope with. I still do everything for him, but don't jump at every summon for help as long as I haven't heard a crash! He will never realise when he is putting himself in danger so there's no point in getting angry at him when he does. If he was living on his own or in a home he would not have hands-on care every minute of every day, so I think I am giving him more care than he would get in that situation, and I do everything I can to keep him upbeat and mobile, but I know that when I cannot cope he will have to go into care. We have already had 10 years of this disease so there will come a point when I will get a life of my own and my priority is to keep fit and healthy so that I will be able to enjoy a few years of peace and doing what I want to do, knowing that I did my best for Tom for as long as I humanly could. In the meantime, I escape to the garden (weather permitting) and play lots of scrabble on the computer so I don't have to think about anything! Not everybody's choice but it works for me.
So many parallels and so helpful Anniemay.. I have only been providing home care for around one year.. But I will try to follow your example of doing things at my pace... as you say the one to one care we give would never be replicated in a care home Gardening and scrabble definitely rang a bell with me
I play an endless game of solitaire on the computer which, to date, I have won 23 times and lost exactly 3, 413 times. What a life! Thanks for your reply. It is exactly how I feel. How can we all keep doing this. If I could have put him in a nursing home last night I would have (I think) but no such options. At least the sun is out today and the sky is wonderfully blue and If I can get outside this window today I will.
This post has really helped me. I feel so guilty for being narky and ill tempered with my husband and then he says sorry he is making me feel like this and it seems like a vicious circle. Knowing its not just me and others feel this way too gave me a boost as the guilt trip I am on seems to go on and on. I am trying to keep strong but in the evening it gets worse and its just exhaustion and no respite from it. Onwards and upwards and trying to smile
Absolutely...trying to keep strong and talking to myself this morning after nightmares last night. How to keep strong and also keep sane, that is the challenge for today.
Carers of the World unite - lets have a world wide scream moment - how about on the 15th November at 3pm ( allows for international time differences - more or less ) we all go outside and /scream/rage / wail vent our unified frustrations at the heavens for 30 seconds in the knowledge that all round the world people like us are feeling exactly the same emotions . ----- Next I am thinking of organising a "carers behaving badly day "- watch this space ! Georgepa
9am for you Jill -5pm turkey 1.05 am Australia (unfortunate!) 10 am Canada ---- perhaps easier if people look it up on their mobile phones - it's quite easy just base it on 3pm British winter time. Georgepa
You can count on me. Probably can be heard all the way to England...Also if you remember send a reminder to us all. I think I will post it on all the online forums I can find. Maybe someone with some power will hear us. Also maybe we should send a note to the news. And anyone who knows how..to add it to twitter. I love this idea.
In the planning stages - have to stop myself thinking of loads of awful things or on second thoughts think up more of them -but lets get the universal scream over first .Georgepa
It's on the calendar, 3 pm 15th November SCREAM. My calendar is in my kitchen and I've noticed that nearly all our visitors read it when they wait for me to make a pot of tea. Some comment on the amount of appointments and professional visitors. It will be interesting to see how many comment on SCREAM. Looking forward to behaving badly but I've always been a good girl so won't be very outrageous....too scared! (or boring).
But why do we feel angry? I have been trying to figure it out is it because of the psp is it because we know that there is no magic pill.
I have just put Brian to bed for a nap and I'm not sure why I feel resentment at the fact he is able to have an afternoon nap is it because I'm tired or is it because I know there will be a time that he won't be getting out of bed.
I got angry yesterday over the fact that all the effort of cooking and then pureed said food he chased it round the plate. Is it because I feel hurt that he didn't want to eat what I had cooked or is it because he is going to have a peg soon so it's another step on the downward slope.
I hate PSP with a vengeance and not only is is robbing me of Brian its leaving anger and sorrow in it's place. Janex
I know what you are experiencing exactly!!!!!!!!!! The food thing had me in a rage. It is all of the above the resentment, the grief, the loss, the imposition, the rejection..until there is nothing left of me. I have started drawing, and painting and writing to try to hold on to who I am. But the holding out a piece of me seems to make me angrier as he keeps pulling at me like 10 needy babies clinging to me and crying for attention.
Jill
Jill, as you have already gathered, you are not alone in your pain and frustration and anger, not to mention near total bewilderment at what is happening to you. We are a very special community - well, I was until two weeks ago and still feel a member because I cannot stop re-living the past three years. Every day without exception I would start by promising myself and Roisin silently that "today I will not over react, get angry, physically force your fingers to release whatever you are gripping, whether locked-in or just plain stubborn to be independent of me because you are angry as well; I will demonstrate my love and admiration of you by being patient and compassionate...etc" Nearly every day I failed and those failures haunt me now.
There is no answer; I think that in our own way we are curiously "locked-in" to unavoidable emotions and our reactions are natural. On the positive side, I found that, even though Roisin could not speak in the last year and could not write for the last seven months, she was always "all there" and so I invited friends and family to stay or just to have a meal as often as possible because in spite of her communication difficulties and the infuriating involuntary dribbling she always seemed to be involved and several have commented on that since her death. And of course she found the CDs and the audio books also stimulating so that finding things that would stimulate her interest became my biggest challenge. That, and overcoming the tiredness that everyone mentions. No doubt, our best days were when I had slept through the night, maybe twice a week. So the two rest half-days each week when a carer took over very competently became my "re-charge" periods. Finally, I did learn by the end that, when very frustrated and near boiling over, often the best way forward was just to stop doing whatever we were trying to do (or I was trying to persaude her to do ) and sit down beside Roisin for five or ten minutes, maybe talking or simply listening to the sounds she made and trying to decipher them. Usually this worked and we were able to carry on constructively.
I should like to think, but cannot really imagine, that my words are any help to you, but writing them helps me. Thanks!
Christopher.
Jill, as you have already gathered, you are not alone in your pain and frustration and anger, not to mention near total bewilderment at what is happening to you. We are a very special community - well, I was until two weeks ago and still feel a member because I cannot stop re-living the past three years. Every day without exception I would start by promising myself and Roisin silently that "today I will not over react, get angry, physically force your fingers to release whatever you are gripping, whether locked-in or just plain stubborn to be independent of me because you are angry as well; I will demonstrate my love and admiration of you by being patient and compassionate...etc" Nearly every day I failed and those failures haunt me now.
There is no answer; I think that in our own way we are curiously "locked-in" to unavoidable emotions and our reactions are natural. On the positive side, I found that, even though Roisin could not speak in the last year and could not write for the last seven months, she was always "all there" and so I invited friends and family to stay or just to have a meal as often as possible because in spite of her communication difficulties and the infuriating involuntary dribbling she always seemed to be involved and several have commented on that since her death. And of course she found the CDs and the audio books also stimulating so that finding things that would stimulate her interest became my biggest challenge. That, and overcoming the tiredness that everyone mentions. No doubt, our best days were when I had slept through the night, maybe twice a week. So the two rest half-days each week when a carer took over very competently became my "re-charge" periods. Finally, I did learn by the end that, when very frustrated and near boiling over, often the best way forward was just to stop doing whatever we were trying to do (or I was trying to persaude her to do ) and sit down beside Roisin for five or ten minutes, maybe talking or simply listening to the sounds she made and trying to decipher them. Usually this worked and we were able to carry on constructively.
I should like to think, but cannot really imagine, that my words are any help to you, but writing them helps me. Thanks!
Thanks Christopher. like you say, nothing can actually help us, but reading your words and knowing the place you are in, does put things into perspective.
I always say, one day at a time, but as each day goes by, you realise how awful this evil disease really is and we are only at the early stages .....................!
Oh, that helped me a great deal, Christopher. Thank you. It can feel so lonely, and knowing that my experiences are not unique and my failings are shared by better people than I am is a great comfort. Love and peace, Easterncedar
Thank you Christopher. Your reply really did help me. I am maintaining my cheery attitude until the sun-downing at 3:00. Bob just came to tell me it was time to go home (we are home).
Someone sent me a poster about carrying on with wisdom, courage and grace. That sounds great, but they have no idea! I get frustrated, angry and cross and feel guilty. I so appreciate your thoughts on just telling him how I feel instead of trying to be a super hero and failing. Only trouble is, he really doesn't get how much it takes to keep him going. But I'll try! Thanks. Jill
Hi, First I found your comments about 50s wife etc. hilarious. I think if you get a baby monitor with one unit near him it may give him the confidence he can always get you to him when he needs you. Of course he could be pressing it all the time but that's better than becoming your shadow. We actually used a battery operated door bell where Sharyn kept one near her and pressed it when she needed me. The bell was loud and in a central place in our home. Worked until she couldn't press the button properly late in the disease. Good luck. I know getting upset and reacting is VERY difficult to control. I didn't have many of these but when I did I VERY quickly apologized with a hug or kiss and sweet words.
Thank you again for your ideas. We had a baby monitor early in the game but it kept me awake with his louder the a fog horn snoring. But I like the idea of him carrying it with him. I'm not sure he would grasp the idea. Lately he doesn't understand much of what's going on around him. But maybe a whistle on a lanyard like in the 50s again. I made a few hundred.
Also about the hallucinations. Yes it is his medication..but they are always friendly hallucinations and he seems to enjoy the conversation so I don't worry. It's like free help.
I also feel like pulling my hair out sometimes, and would like to stick my hands around my Aunts neck. It is very hard because you are now two people and I want to tell her to F--- OFF sometimes I do and then we laugh but sometimes I am serious. If you are in the States the is a Grant you can apply for that gives you a much needed break, it gives you a 1000.00 voucher to pay someone to come in and take care of your loved one what ever hours they work, it can be a friend, relitive , caregiver so you can just go to the movies or get your hair done anything to get away so you dont go postal. Your feelings are real and your thoughts are normanl unless were not normal at least I too feel and think those things I used to ask my self when I would want to strangle her, shit Kryste what if that was you, and guilt would set end , well let me tell you not no more Aunt Bev is no joke she knows exsacly what she is doing. It took me a long time to figure out most of the time she was getting a kick out of watching me go nuts (she still does) sometimes I would want to make her eat that whistle I got her so I could hear her when she needed or wanted something. I dont know maybe im just a strange one because no one in their right mind would take on what we do. I will look for the name and # for the grant, I know its small but its some relief hang in their and breath.
Your aunt should daily thank God for your sacrifice...My Dad and I had a conversation (Parkinson's Disease) about how much he hurt my feelings when he said he hated my cooking...he replied "Good that's what I am trying to do." I answered him "well good, at least we have that cleared up." I also once told him "Look old man you better treat me nicely because you need me." That gave him pause. It is hard hard hard hard. My moods go up and down and sideways all in an hour..I felt this morning like I really was going crazy and then I reminded myself that I didn't have that luxury!
Thanks for the info about the grant but we live now in Costa Rica because it was impossible financially to live in the USA and not be able to work and not be able to have any help with both my father and my husband. It was like I was running a nursing home with only me doing everything.
Keep on keeping on...And I am taking a moment to beam you good feelings and a good nights rest.
Jill
Costa Rica
Wow. Just read all of the above in one sitting and related to all of it. Prior to sitting down at computer I had woken to a litre of cooking wine smashed all over kitchen floor, wine footsteps everywhere. C had had yet another accident during a nocturnal ramble. I slept through it all of course - just had to clear up the mess. NOT a good start to the day. And whilst thoroughly approving of the global scream plan for Saturday, if I join in I'll have neighbours flocking round and maybe even someone phoning jandarma so I shall opt for standing in garden and taking deep breaths instead. Meanwhile I will post on Twitter as follows: '3pm UK time on Saturday 15 November - GLOBAL SCREAM! For all carers. Vent your frustration with a loud SCREAM.'
Wow, this could be interesting. The only problem I've got is England are playing South Africa at rugby, so we will down the pub, (in South Africa) trying to cheer our boys on.
Love the fact you are going to Twitter the scream. I'm not on it, but if I remember I'll post it on facebook. We could go viral, that would be fun to see if there is any reaction in the world! Don't hold your breath!!!
I was also thinking of Facebook. In fact I will go and post there now. What it really needs is for PSP Association to get on board and encourage people to scream and donate (like the ALS Ice Bucket Challenge earlier this year). Think about it. Lots of people who aren't carers could benefit from a big SCREAM. There used to be Primal Scream Therapy after all - and still could be for all I know. People could video their SCREAMS bung a fiver to PSP and feel better all round. Maybe PSPA admin will read this and do something. Do they have a Paypal account for donations? Anyway will go post on FB before I forget.
Instead of screaming out loud write a big sign in red and just walk outside and hold it up real high to the heavens.
Jill
OK have now posted GLOBAL SCREAM on Facebook and US Cure PSP Forum. Will keep tweeting about it over next couple of days. If you want to see what I said you can visit me (or friend me) on FB under Patricia Temiz. On Twitter I am temizpatricia.
Good Lord what have we started ! all strength to you posters on Twitter and Facebook - Universal screamers of the world unite! -I will post a reminder Saturday. Make it our day . Geoergepa
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Sandy left us yesterday.
Firstly, I must say thank you to this community for all the advise and words of wisdom.
My dad was diagnosed with psp for seven years and I
