It's taken me all week to write this post, I wrote a really long one when we were still at the hospital and then lost the blooming thing! I've been so upset all week and couldn't concentrate but here I am and I'll try again!
The second night Keith was in hospital I decided I would try and sleep on the floor by his bed (bad mistake!) The lovely nurse gave me a makeshift mattress, pillow and covers, so there I am on the floor trying to make my bed, took my eyes off Keith and guess what he did? Yes he pulled his bl---y catheter out again, his bed was covered in blood, it looked like the chainsaw massacre! We cleaned him up and I tried to get comfy in my wonderful bed, bearing in mind I was in a ward with four men, one who was opposite Keith shouting in his sleep and was a complete nutcase and three were snoring, not a great combination! So I lay there barricaded by chairs and thought this isn't going to work, I couldn't stand another night without sleep and Keith had done the one thing I was trying to prevent so there was no point! I was worried that he was going to try to get out of bed, he kept throwing his legs over the rails, so I asked if anyone could possibly watch him. They were so short staffed and agreed to wheel his bed next to the nurses station where they could keep a close watch over him.
So I drove home and managed a few hours sleep. My youngest son went to hospital the next morning and sat with his Dad till I arrived. I spoke to the doctor (who looked about 12 years old!) who hadn't a clue what PSP was (surprise surprise!) and told him I wanted to take Keith home he was getting very agitated, of course they wouldn't allow it, he wanted Keith to see a neurologist, I tactfully (ha ha) explained that we had seen all and sundry available and there really wasn't any point, I just wanted him out of there! Anyway he agreed to him being discharged the next morning and arranged for an ambulance to take him back to the home. The lovely nursing staff agreed to put him next to the nurses station again which was a great relief as I think Keith was a bit frightened of the man opposite him (I don't blame him, so was I!)
He arrived at the home next day safe and sound thank goodness and I asked the nursing home if they would give me a bed and look after me for a couple of weeks! My plea didn't work unfortunately!
So this last few days I have been feeling really sad, I hate it in the house on my own without Keith and have been to see him at every opportunity, he has surprisingly only asked to come home once but I can tell he's doing it for me because I know he was worried about me. I don't know if I'll ever get used to this situation, I feel sick all the time and have lost weight. I know I'll have to get to grips with what has happened but at the moment it's one big long nightmare and I hate it for what it's done to Keith and us as a couple....😔
Rant over, sending you all love and hugs....Pat xx
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Pat what a nightmare you had in the hospital, they needed to take some time to read up about PSP, oh how I hate that illness, it takes away everything, all our dreams, our loved ones, and makes us careers into nervous wrecks, to tired to do anything. Pat I was talking to one of the careers that came in today, and I said it is like when your child goes to school at the very beginning, you just want to protect them from everything, and make it right for them, that is how I felt this week, ringing doctors, nurses, speech therapist, etc etc.
Pat you can't beat yourself up, you made the right decision, you could not manage to keep Keith safe at home, with transfers, etc. !!!!! You have done the right thing for you, you can visit him anytime you like, and care for him just as much, and he nows that, yes the house is quite without him, but you will get use to it in time. Start eating properly, because you will not be any good to Keith if you are unwell.
Life has sent us this to make us stronger people, and Pat we are, because we have had to fight for them, and we will survive because we are fighters, pick yourself up, and in a few months time you will see you have made the right decision, and Keith will see his lovely wife back again. Sending you the biggest hug Yvonne xxxxxx
That's no rant, just the news. I think you have been amazingly strong, with all you have gone through. I'm glad your son was able to help out, that you are not entirely on your own. I hope you can relax, get some rest. Hugs, ec
Give yourself time to adjust to the new living situation. You may never accept it as such but in time manage to cope with it. Yvonne has written beautifully.
Try a little bit of small snacks to keep your energy going.
What a terrible time you've had this last while and all the while fighting for the best for your husband Keith. The worry and stress will take their toll if you let them. Dont. You've done absolutely everything possible to look after your husband so now that he's being looked after in a safe and secure place, try and build yourself up again. You must eat and rest. Even though he's not at home with you, all the visiting will still be hard work, physically and mentally, so please mind yourself now. God bless and take care. Marie
Yes that's so true about the visiting, emotionally and physically it's so so hard, all I want to do is bring him back to his home where he belongs with me but this horrible disease has stolen him from me 😔
Awe Pat, I'm so so sorry sounds like an absolute nightmare that I can totally appreciate from when dad was in hospital earlier this year! Mum had a makeshift bed put up and of course didn't get much sleep, unbelievably she kept that up for 4 days and prior to that we stayed every night in a chair, eventually I told mum enough is enough and you must come home and rest and of course dad hated that that! And now for you being home alone must be bloody horrible and oh so strange but in time, you will get used to it. In the meantime Keith is in the best place for his safety and well being! You need now to rest up as much as possible and eat properly so as you keep well! I think of you regularly and am sending you all my love, I'm sorry I wish I could do something to help!! X
They don't show all of this on Holby City do they? What a nightmare Pat, the emotional and physical strain is immense but please don't beat yourself up that K isn't able to be home with you. Try your best to get some sleep and make sure you get some nourishment otherwise you will end up in hospital. My heart goes out to you both, PSP certainly knows how to make all concerned suffer, it is a cruel monster that takes all of your hopes and dreams away.
Take care Pat and remember to look after yourself.
So true, Katie. it does take all our hopes and dreams away. It is like living in a nightmare. Still, we can articulate it, unlike our beloveds. They need us to fight their battles. If I needed someone to fight mine, I would want all the people on this site behind me. Despite feeling down, they are all formidable warriors on behalf of the ones they love.X
Hi Pat, ranting is what we do on here. How can we help or support you, if you don't tell us what's going on? That's how this site works, you rant, we try and help. It's a two sided coin, you know full well, we get just as much trying to support someone, as we do, if we need help.
Right, to help you! Glad Keith is out of hospital, not good places to linger, only ever designed for the staff, never ever was there a thought for the patients or their families.
I am sure, by now, you have witnessed and come to the conclusion, that the staff manage Keith a lot better than you could ever possibly can acheive. I know that hits me, everytime S is in respite. I feel really cruel taking him out of such a safe environment, to bring him home to me, who is constantly crying and screaming. It will come to the a point when he will be safer and happier in the nursing home, than being here with me. We are on that very sharp knife edge now, I am suspecting, that we are over that edge now, but I am just not admitting it.
How you you cope with Keith in the nursing home? Of course at the moment, it's like hell on earth. Given time you will get use to it. Of course it's lonely, empty and wrong. Again, given time you will get use to it. Getting use to not being on permanent call, cleaning up, you know what and the constant washing, must seem so strange. I expect that's the first thing you will start to think, how did I ever cope? But cope you did, just like you will learn to cope with the latest twist in PSP and caring for Keith. Your role there is still vitality important. In fact, you can now go back to your proper role, the one you stood up, in front of all those people, years ago and promised to look after him, in sickness and in health. You were promising to be his wife, well now is your chance to actually fullfil that now. What you have been doing for the last few years, is not being a wife, but his Carer.
At the moment, I am sitting here watching S struggle with breakfast. First he insisted on not taking his medication, (God knows what his bowels are going to be like, that's the third time in a role!) then feeding himself. Needless to say, he has ended up wearing most of it, so with the help of of the dog, we have cleaned him up, his nose is running for England and quite honestly, looking a complete disgusting mess, yet he is getting grumpy with me! I just haven't the patience anymore, way too tired to cope with this. He is being so deliberately awkward at the moment, this morning I am trying to get him ready to go back to the Hospice day centre, so it's for him, yet still I am the villain! And this is the easy part of being a Carer, if I was being a wife, he would definitely be wearing the rest of his rice pudding!!!
Pat, give yourself a couple of weeks, learn to eat again, rest as much as possible, regain your strength. You will feel so much better, then you can start to make this stage that you are at, work so much better. Make a set time that you go and see Keith. Take a book and just sit and read, while he dozes, maybe go at mealtime, so you can feed him, or when your favourite TV programme is on. Anything, just get a routine, that works for you, going. For the rest of the day, well you have to start learning to live again. Contact those old friends, you haven't seen in years, go for coffee. Join the local gym, if that's your thing. Join a night class or day class, learn a new subject. Take to walking, maybe, if you haven't a dog, get one. Clean out those cupboards, that you dare not open. In other words keep busy. Make a plan, the things you want acheive next week, nothing big. Post that letter that been on the side for week, you know the sort of thing. Just make sure at the top of that list is REST!!!!
Your biggest task, is to re-learn how to be Keith's wife again. Once you do that, everything else will fall into place.
Heady, thank you for making me laugh. How did you know about my cupboards and unposted mail? Its good to know that I'm not alone. Maybe I should get another dog being as they are so useful........X
How did I know? 'cause I can't open mine and there is always a letter lying around. AND.... It was a throw away line, hoping someone would tell me I wasn't the only one going loop the loop!!?
After your post, I set too and sorted out a small, bedside drawer. The trouble is, that most of the things have been distributed to other places, so not a lot was thrown out. Still, it's a start. Sock drawer next!
I would love one,Heady, but after I blacked out last time, due to Reflex Syncope, ( don't ask!) I am advised to lay off it and to drink at least four pints of water as well as my usual tea, etc per day. Life just gets better and better! Raise a glass for me will you? X
Heady I keep meaning to tackle all those long awaited jobs, cupboards, mail etc but haven't got the inclination to do it at the moment ( well that's my excuse and I'm sticking to it!)
I am trying to visit now at similar times each day, usually 5pm to 9pm. I can help Keith with his meal and then we can sit and watch the soaps which he loves and while he dozes I usually read or play about with my iPad. Trouble is I'm getting quite attached to several of the other residents there, the staff think I'm a natural born carer, maybe I could get a job there and then I'd be able to watch over Keith and get paid for it!
I've also arranged days out with my friends, one of them being nanonthenet who is on this forum, she lives fairly close to me and we've met up a couple of times before, her husband is also in permanent care so we have a lot in common!
Stay strong Heady, you are a brilliant, funny lady, never lose your sense of humour it brightens all our days!
Gosh Pat, already you sound different, more positive. I know you don't feel it yet, but you will, one day. In the meantime, this will be having a great affect on Keith, he will become a lot calmer and more relaxed, as you keep improving.
As for those jobs, I did say, put sleep and rest at the top of the list, jobs are next week's or months challanges!!!
Reading the responses I think its all been said above. I agree with everything Heady says. As soon as you catch up with sleep you will feel more able to cope.
Its so hard accepting the loss of a relationship. I keep telling myself that I must make the best of what I still have or I will regret it later. Not easy.
Thanks Jean, you're right, make the most of each day while you can ( not easy with everything we have to deal with I know!) but you can never tell when it will end and get too much to deal with!
I'm raising my glass to you as we speak, take care...
I will raise a glass to those sentiments ' hard to accept the loss of a relationship' I'm finding that so difficult ( and taking 10 minutes to get 2 paces across the room dose my head in) but that's a different issue
Pat my heart goes out to you but hold fast .Keith is in the best place,he is surrounded by professionals and deep down probably feels more secure .Now you must concentrate on you .Do you have a close friend who could come and stay with you for a while who would help you through this most difficult time ?Or could you go away for a while -Keith will be quite safe .I have often wondered whether we should set up an emergency help line just so we could actually talk to a friend who is going through a similar hard time.I for one would be happy to put my number out there.There would always be the proviso that if the phone rang at one of those moments that you just couldn't stop and talk you would have tosay so .I don't know just a thought .Anyway lots of loveGeorgepa
Sweet and generous thought, George. I like it! The psp pals hotline. One thing I appreciate about this site is that someone somewhere is awake when I am, and a comforting word is rarely slow in coming. It has saved me so many times, and I am always grateful, every day. Peace, ec
Hi, I agree, or better still a lunch club or coffee mates. Most of us have someone fairly near. Don't forget UK readers, the PSPA support group meetings. You may not think you are that type of person, but it is somewhere you can go, knowing everyone understands what you are going through and of course, meeting people that you can set up some sort of lunch or coffee group.
What a lovely idea George, I think that would be a great idea, a PSP help me line! I know we would all understand that at "one of those moments" it would be impossible!
I've thought about going away somewhere but it's early days yet and I can't bear the thought of going without Keith at the moment, we loved to travel and had at least two holidays a year, I've not been since May 2015 and that was a struggle even though we took our big and strong youngest son with us!
Oh dear, what a lot of scary, sad times you have been through lately. You must feel completely wrung out. Poor Keith, it is so hard for him isn't it? Thank goodness he has you fighting in his corner. I think you did right in getting him out and back into the home. I was in an emergency ward one night and some of the patients can be scary, I was told to keep an eye on my handbag. I slept with it at my feet, like a hot water bottle, but not as comfortable, or cosy! I have become addicted to Homes Under the Hammer as it shows good things coming out of bad. Unfortunately this can't be said of PSP. Sending a great big HUG. You're doing great girl! X
I'm feel awful reading about your stay in hospital, can't imagine what it must have been like for you. PSP really is a horrible illness for the person and anyone around them. You are doing the right thing, all we can do is what we think is best for our loved ones. Unfortunately it's trial and error. Stay strong and make sure you let everything out, bottling it in makes it worse. Xx
Thank you, I don't think I have cried so much in all of my life, I miss him so much, I'm sitting at his bedside now and just want to take him home with me....
Hi Pat, I am sat, at home with S beside me. I feel just as lonely as you. I am trying to get him to bed, no Carers tonight, am exhausted, didn't sleep well last night and been to the osteopath today. He is going into respite on Monday and, unfortunately, I can't wait. It's not going to be long, before I am in your situation and I know, it will feel completely different. Life is soooo hard isn't it, can't cope with the life we want, yet the alternative doesn't bare thinking about.........
It's an awful stab in the stomach type of feeling, the kind you feel when someone you love dies, it's almost like grieving! I can't explain it very well but I'm sure you know what I mean .
Pat, it's not almost like grieving, it is grieving! We have all been doing this, for many, many years. Ever since PSP took over our loved ones, long before we ever knew something was wrong, or even suspected. I know that doesn't make what you are through any easier, nothing can. All we can do, is carrying on fighting, not letting this evil disease win every battle. The one you have now started, is one that has to be won. But not today. You still need to recover your strength. So put PSP on notice, you are gunning for it.
I tried to read your post last night but was so tired I felt I needed sleep and better to read it today.
You have been to hell and back you poor woman. I don't know why Keith was in hospital but when my husband ended up in there with pneumonia I really wanted him out again. He hasn't been the same since to be honest. He was in a stroke ward although he hadn't had one. They said it was the only bed free. Maybe because they didn't understand what to do with him? Nobody had any idea what was wrong with him. There was no TV so he was looking at a blank wall and now in the Care Home refuses to watch TV! Yet before this he was glued to the thing!
I can't imagine doing what you did sleeping on the floor...or trying to! What a nightmare you have been through. You are a lovely lady and a very caring and brave one to do what you did.
I am glad he is back at the Care Home. It seems to be a good one and you can visit him easily and live a semi-normal life in the meantime? I have lost weight because I have not been eating! I have lost a stone but I won't miss it as I needed to lose weight. I know it was stupid half starving myself though. I was just so tired all the time I couldn't face cooking anything for myself.
The awful awful thing about this is it steals everyones lives. There should be posters and leaflets in every hospital to make people aware of it? I have never seen one. How about you?
My husband also has Leukaemia and guess what it has to be very rare too! Apparently he should have died after 3 months! That was 3 years ago! Is there a poster about it at the local hospital? Nope! However at long last I have noticed there are leaflets and even a support group at the specialist cancer hospital that he went to too. Not sure he will again.
I think the association got the main specialist at the hospital on board. He is very good and now this will help future people with the condition. In fact there are a group of conditions so they are all lumped together and now people will become aware of them?
Why not the same tactic with PSP and other progressive and rare neurological conditions? Nurses and doctors would actually hear about them? That surely has to be the way to educate people? There are so many desperate people on this site. How many never join, or do, but don't post their stories?
Pat, like you I hate being alone in the house. My husband is supposed to be coming home and he asks me all the time when he is coming home. The truth is I am not sure I can cope and my husband is nowhere like as bad as yours is. So please don't think you have done the wrong thing. You have done more than I could do. I really wouldn't be able to do all you have done.
The Care Home my husband is in will not be where he ends up as they told me yesterday they don't do PEG feeding. They are for the frail but mobile mainly but there are a lot of dementia patients there now. However I asked the question yesterday of him and his poor face will haunt me forever. He looked so frightened and said he didn't want it. So I then had to explain the alternative. He said he would rather that. I need to get that and his DNR in place though as there is nothing there at present and I am hoping I can get a doctor there tomorrow to start the process.
My husband never knows what day it is now and keeps asking me where he is and crying a lot. He has nothing to do but look at the wall or the car park! The manager is on holiday but when she comes back I will ask can he have a bigger room as you can't swing a cat in it! He only went in there so I could get a hospital bed at home. Next thing he was in hospital and now back there again. I have asked him if he will go to a Care Home nearer home so I can visit him easier but he said no! I don't drive so this is a nightmare trying to get lifts there and I am really relying on a couple of people and our son. It is at least a 35 minute drive. Depending on traffic.
Yesterday was our Golden Anniversary so I got a lift from a friend and was there for 11am. The time we got married. I ordered him some flowers and I am getting him a Gold religious medal. Goodness knows where but yesterday he told me he would like that. I haven't been to town for weeks now hence the flowers! I spent all day yesterday with him and unknown to him I had asked our kids and Grandchildren (only 2 of each) to come along with 2 friends and the partner of one of my kids and my brother and sister-in-law. By the time they arrived and the carers had got my husband changed and in his wheelchair he was wondering what was happening! When I walked out of his room I heard him say something about home. I am not sure if he was asking if I was going home or if he was! So not sure the above was a good idea? We had photos taken. Both of us looking like wrecks for different reasons!
He enjoyed the wine though! Why not? He hasn't had a drink for ages. Interestingly one of our friends noticed he didn't choke whilst drinking it and thought it was because you usually sip wine. I think he maybe right. However he can't drink wine all the time.
I was totally exhausted when I got home. Which sounds bizarre as I didn't do much apart from plot with the staff how we could get him to the room! He wanted to go to bed.
Makes my life seem relatively normal when compared to yours Pat. I am so lonely without him though and not sure what is going to happen with him. Wouldn't be so bad if I could visit him each day or even alternative days. I always thought he would die at home or because of his Leukaemia in hospital, where they actually had an idea of what was wrong!
A great big hug to you Pat. I am full of admiration for you. Your husband got the short straw with PSP but was very lucky to have met you. You are a jewel, so stop believing you are not doing your best for your husband. You are doing more than your best!
Thank you Marie for taking the time to write such a lovely message, I really don't think I could cope without all of you on this forum, you all help me so much....
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