Hi guys, Life is getting so hard now. Don't know how to cope. S, since being in hospital, has not just gone downhill, but seems to have fallen off the cliff!!! It has been a constant battle, each day has had some sort of crisis. I have had to kick and scream and in the end, burst into to tears to get the District nurses interested. Now I have got the doctor to prescribe enemas and this morning, in the surgery and another breakdown, hopefully they are going to come out and do his INR tests. Well, if they don't, he ain't having them done!!! S had a fall last week, couldn't get him up, so it was 999 and a visit from our doctor. Yesterday, on DN's advice, I requested another home visit, he is coming back on Thursday. I now have equipment to transfer S to any thing, nice bit of kit, a ReTurn. A bit like a sack trolley, that you can stand on and be turned around to sit on something else. It's wheel chair in the house and raiser chair in the lounge. (What do you do with the extra furniture?)( where do you store all the equipment???). Took me nearly an hour to get him out to the car to take him for today's blood test and a very bruised foot, where I dropped the ramps, when we got home, as he was trying to get out of the car, while I was setting them up! The neighbours nearly heard a load of new rude words!!! I am so exhausted and mentally drained, from crying ALL morning! I know I have respite due in two very long weeks away, if they will take him, due to the decline. Waiting for the CHC people to phone, to tell them and ask for extra help. My next dilemma is, the car! Getting very fast to the point, if not past it, that I need a special vehicle, so I can take a wheelchair. Where do I go?
Just feel so frightened and lost. Don't know where to turn, our lives as we have had over the past year is disappearing fast. Have had to stop the gym visits. Well had to stop everything S does, I physically can't do it! What is left? My time with the Carer, is now me helping, so my time off is getting shorter each week. In fact the last two weeks, he has had appointments, which the Carer has come with me, which did make everything a lot easier. But I need time to breath! I know you are all screaming, follow your own advice Heady! In fairness I have been trying to do, but nobody is listening. It's constantly sitting around waiting for others, to ring or to come. I have become TOTALLY reliant on other people to do their jobs and we all know how long that can take!!!
I know we all want to would like a time scale, but now I really do. Knowledge is saying this could last another couple of years, I don't think so. My personal feeling, is six months max! That, I think I will be able to do, but two more years. No way! What do I do? how am I going to cope.?
I have always hated this illness with a vengeance, now? Well, if Jeffery Archer wrote about it, he would be laughed out of the bookshop!!! The cruelty of it, just beggars belief. It's all the other people it affects. It's not just S and me, it all the rest of our families. S's are to scared (or don't care) to come near, mine are on their knees, trying to help me, physically and mentally. That alone, must be hell for S to witness, without any of the rest. I know it is for me.
But how can I wish it was over????????
Lots of love
Heady
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Heady
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Sadly so much of what you said replicates what my poor Dad is going through - as he so eloquently said "it's not like there is light at the end of the tunnel" and I think that is what is SO desperate about this illness and for those who care for those who have it.
As you know Dad has gone through many of the things you mention in your post (and many others on this site but I can only speak from our experience) and it is SO hard to find ways for even myself to help. Yes I visit, yes I call, yes I cook meals and try and keep Mum company but it doesn't really give Dad the break he longs for or more importantly needs.
I can't help you Heady but I can listen and empathise with you. I wish there was something I could practically do. Have you contacted Marie Curie Nurses yet - I know that if they're available they might be able to give you some help - not sure if your District Nurse or GP has to make initial contact but might be worth asking??
I so understand what you mean about "how can you wish it was over?" I spend days deliberating with myself - I'm not ready to let go of my Mum yet but at the same time it's heartbreaking watching Mum and therefore Dad go through this horrific process.
It doesn't make us bad people for thinking about this, it just shows the love we have for Mum, for S, for all the others.
I think that's the saddest thing, nobody can help! Yes, people can come, do the hard work, even stay with you. But NOBODY can make it better! Even I can't make it better, which make me feel so useless!!! S looked at me last week, with such tired, resigned eyes and there was NOTHING I could do. Putting my arms around him, telling him, I loved him, just doesn't cut the mustard. He doesn't want my love, just some action! Which I can't give. It's making me so angry and bitter. I don't want S's last days, filled with me screaming,shouting or crying. That isn't what we deserve after being on this planet for so many years.
Thanks for listening Kate and it really was lovely to hear from you again! In the end, a shoulder is all any of us really want.
Get rid of extra furniture ,, I did perfectly good furniture but it was the only way to be able to keep John at home with me ,
I did t want to do it of course but what other option is there .. I know don't tell me , I want to keep John home ..
Yesterday and today John has been dreadful . Safest place has been in bed . He cannot utter a word although trying vey hard . Chewing imaginary food , didn't want to use the commode because the room full of people were watching him .. Trying to feed himself imaginary food . Etc etc .
We have carers but because John is fully incontinenet I need to keep hoisting throughout the day .. So of course he is mostly seen to by the time they arrive .
Still waiting results of CHC?
One good thing . So far the new care company are an improvement so not all bad news .
Physically since John has progressed further . He doesn't get out at all , is bed or chair bound , has been for a very long time . By using the ceiling hoists I have found it less physically easier .
Not sure I want to throw away the armchair, from a relatively new three piece suite!
Sorry to hear John is not in a good place. Hoists haven't been mentioned yet!!! No doubt they will be winging their way here, all too soon, with a hospital bed, which will mean separate bedrooms and the problems of night communication. Never ends does it, each thing bought in to help, causes another load of headaches!
Oh, Heady, I so sympathasise with you. I have been there and know how it feels. My husband went into 'respite' on Christmas Eve! He has been there since that time. Only yesterday heard that he has now been placed in residential 'care'. So horrible! I feel so guilty. When I visit it is so hard as quite often I feel that I might as well not be there. I find myself wishing things would end. So unfair that someone who was so fit until about five years ago could turn into the person he has become.
I don't mean to sound glib . Or want you to think how hard it is for you all. .. So many been there and really do understand .
The struggles I had not just going out for pleasure because we couldn't it was just even getting to and fro the hospital to consultant .. I eventuall gave up when I had to call a postman and anypother gentleman to help me lift John . His legs collapsed beneath him. They carried him home up the street and put him into his chair . Lucky they were there. No one else about .
After that I got the D Nurse to call to check his INR , don't get to see a GP now .. Or consultant we cannot get to the hospital . We do get very occasionally the Parkinsons nurse . She does her best to liaise .
I damaged my back and neck which still trouble me .
So when I say once the AIDS are in place it's much easier for me it is .
The machinery does the work for me ,
The hospital bed had to be brought downstairs , we hadn't been able to share a bed for along time . Once his was downstairs I bought myself a four foot bed . .
I had to get rid of the dining table and sideboard . To make room . I did buy a nice smaller folding one . And had to get rid of a newish armchair ..
I have been fighting for two years for continuing HC.
The last two days Ben dreadful I have just sat down to finish this , after the carers left I could hear a noise . He was thrashing jumping uncontrollable ...
Myoclonic jerks ..
His mouth is distorted .. . Me shouting out stop it . Of course I am stupid. , how on earth can I say that . He wouldn't be doing it would he if was able
I will have to put the pipe lagging back on the bed rails . He is hitting his arms on the rails ,
As I often say . You couldn't make it up could you it's so cruel for both them and us .
i had better go and investigate it's gone suddenly quieter . .. Hopefully he will settle soon. ..
It's my day for my two hour sitter tomorrow . Doesn't look as if that will happen now. .
She would be frightened silly if it happened while she was here .
So sorry to hear this, Heady. I dread it when we inevitably reach this stage. Although I like to plan ahead it isn't possible with this disease. No-one seems to be able to face it. By the time change happens its then delays.
I find all the phone calls utterly exhausting. No-one can really know this until they've experienced it.
Then there's the emotional turmoil !!!
I can think of you, send hugs and love. Better than nothing ?
It is soooo hard and getting harder. I lost all my respite hours on Monday and last Monday and tomorrow both crossroads sitters will be here for PEG training at some time in the morning so I can't go out until it's done. If I had a pound for every time I hear, " I don't know how you do it" I'd be a wealthy lady as probably every carer here would be.
Furniture! I bought C a new chair for Christmas as the one provided is no longer suitable. I asked for it to be collected in January, twice in February and twice this month. It's still here. Apparently it is a two man job and they only have one man jobs on until at least 3 weeks time. I told them if it hadn't gone in 3 weeks, I will ring the Hospice warehouse and get them to take it. The chap laughed. I told him I wasn't joking. Part of our suite is now upstairs and the door is off the bedroom as we couldn't get it through the door.
Car! We had to get a wheelchair adapted vehicle. I was quite prepared to sell our car and buy a second hand one but managed to get one paid for by our disability living allowance. C would have been house bound 2 years ago if we didn't have it and the electric wheelchair I had to buy, which is also stored indoors.
And so it goes on. I think we have all the equipment we can now....I do hope so.
I really don't want C to leave home but yesterday felt like I think you are feeling. Today I've been in the sunny garden, listening to the frogs and the birds and feel much better. OK, 3 lots of washing due to bowel movement in bed that missed the disposable sheet, complete change of bed and it happened again, another change of bed. In doors every 10 minutes to use suction pump, empty convene bag, answer phone call saying night carer sick so stranger coming, C's lunch, drinks, PEG feed etc but being outside has made a difference.
The worse thing is seeing him sitting or lying all day with his eyes shut, moaning as he breathes, not knowing if he is in pain, getting no response. It's heart breaking. I try not to think about how long this is going to go on for. I wonder if he is thinking the same.
I hope tomorrow will be better for you, for all of us and may the sun shine.
I know how hard it is for you. How much easier it would all be with proper, reliable support. It would still be a nightmare but less exhausting and frightening. Its when the "experts " say things that show they have no idea of the day to day living with this.
We are going up to Yorkshire tomorrow and I am mainly worried about dealing with continence issues when I have no tumble drier. Plus on the long journey. Too many struggles in toilets down the A1 !!
I hope you have a lovely time in Yorkshire Jean. I know what you mean about continence issues away from home. With luck, you may not need the tumble dryer, should I say a lot of luck. I'll be thinking of you on that long journey. I think you are amazing driving all that way.
Hi NannaB, I think it is the lack of communication that frightens me the most. I haven't a clue what he wants, if he is in pain, happy, Sad, hungry or thirsty. It's all guess work. The every day things are fairly easy, meals are served at the normal times, drinks, well he never touches those and toilet runs, I have managed so far!!! But after that, who knows? Take us out of home environment and I am up the creek with out paddle! What doctor is going to take you seriously, when you say, "I think", or "may be!" At the moment, I feel some unlined problem is going on. Can't put my finger on it, but something is wrong! And there is nothing I can do about it!
Oh, Heady, I feel just like you tonight, feeling so alone with it all, all the help and advice from our really great team but when we are alone, everything goes through the window. We have hospital bed and equipment in our living room, it's very hard for us all, I'm in my bed now at 7.15pm he is sleeping, I will have a glass of wine and catch up with tv, and hope I'm not up in the night....thinking of all of us tonight xxx
I have a friend who's husband is in stage 4 of liver cancer. Still doing chemo but to no avail......We asked ourselves that very question, "How can I wish it was over?" The guilt one moment ; the exhaustion the next; the anger the next moment? and of course it all ends with the crying.....
Here in the US we do not have helpers unless we pay for them. But I can only imagine that I would be assisting them giving me really no respite. And our hospices are for those whose death is imminent. Until then, we must help our loved ones stay afoot on that slippery slope toward death. B has gone down a bit lately but comparatively, he is strong and healthy and has 'many miles to go before he sleeps' which means my sleep shall have to wait too.
Heady I say all this because I want you to know what you already know...we are all dealing with this . My husband is strong and young. What is keeping him healthier than most on this site also breaks my heart. He got this when he was in his early 50's, (like many of our mates). I too feel frightened and really have to double down on my spiritual strengths.....I am sorry for S. It is no fun for him stuck like a man in a 7th story burning building; Do you jump or do you wait hoping for a chance of a rescue But you know the truth, both end in death.
I do not wait anymore for a promise from this world. It is the greater promise that allows me to get through the crappy days....not always ...This winter I was physically sick and spiritually weak.....but slowly like the sun warming air, I got stronger.
You are in some crappy days you feel like you're on that 7th floor. Stay strong work at keeping the fire at bay. take a walk. Today I took my friend out to a taco truck. For an hour we talked about something other than our husbands illnesses. And we absorbed all the vitamin D our middle aged skin could glean! I had fun today! It was only an hour . But I promise you, it got us out of that 'burning building' even if only for an hour. First time EVER to do something like that! Do something like that Heady NOW !
Oh AVB, you have bought tears to my eyes! Yes, we are all in this together. My close family do support me enormously, but only people who are in our situation can fully understand the horror of this disease. I do try and get sometime for myself, on my time off. Rush around like an idiot some days, or just go to bed on others. Tomorrow, my sister is coming over, so I can go the the hairdressers. 2,1/2 hours of peace. Might feel a bit better, if the face I have to look at in the mirror, all the time, is not so grey looking!!!
I am not reglious, thank you for not mentioning it. Although I do envy you, your faith. You did get meaning across, which I deeply appreciate!
Our kinship is deep girl....would we have ever met without PSP?
Funny thing, after the lunch I got home and immediately took B to get his hair cut. Before he could say no he was out the door. (Get him pretty for his neurologist tomorrow) and I asked the barber if he did women's hair.... He cut my hair to about about 2 cms long all over my head...It's the shortest and cutest I've (ever?) had. I love it! so today wasn't so bad for me and I hope that tomorrow is good for you.
Oh Heady I really feel for you, I'm in the same state myself and it's awful to witness the slow decline of the person you love and so distressing when there's absolutely nothing you can do about it!
Keith is still constantly watching the news desperately trying to hear some news about the trials that are happening. He keeps asking me to ring up and find out and when I explain to him that I can't he accuses me of not caring and being stubborn!
He's asking me all the time to get his doctor to visit him at home and I'm at a loss of what to say to him, he's just got it in his head that I don't care😢
I've caught a bug off my grandchildren and woke up this morning with raging stomach ache and was violently sick as soon as I got out of bed. I've been dozing on the settee for a couple of hours this afternoon feeling very sorry for myself, how I miss Keith not looking after me when I'm ill!
Like you I too am very frightened of how bad it may get and whether I will be able to cope with it, it's so heartbreaking isn't it?
I just wanted you to know that I'm thinking of you and all of the other people on this site experiencing this horrible relentless PSP, I wouldn't wish it on anyone!
Once you have got the hang of the rotastand things will be a bit easier with the transfers. Even though Brian can only grip securely with one hand we have devised a good way of still being able to use it.
After Brian had to have all the treatment for his blockage the community matron said to give him a laxido and some lactulose every day and so far it has worked well. Would sooner overdose him with lactulose then have to go through the enamas again.
Thanks to the community matron we have his blood pressure and everything else checked at home. As i bemoaned it takes me half hour to get him ready and out the house. At least 10 mins of pushing and pulling him about getting coat off and then his arm out of his jumper. It takes her less then a minute to take his blood pressure then I've got to get him dressed again. Back home another half hour or so to get him undressed and transferd from wheelchair to armchair. It takes the district nurse a five minutes to enter house get her blood pressure monitor out take his pressure and note it down. Funny how his blood pressure is better since he has been having it done at home. The lady i care for has a DN take her blood every week for her waferine levels so it can be done.
We live in a bungalow so we have made the lounge into our bedroom so that it fits his hospital bed and a my single bed and wadrobe and chest of drawers the rest has all gone. The double bedroom is now our lounge and all its got in is 2 recliner chairs and a small 2 seater settee the rest has gone. I think we have only got half the amount of furniture that we moved in with. But on the plus side less stuff to clean.
My prayers go out to all of you! I know what you are going through. My mother passed away from this horrible disease March 7th of this year. She was 66 years old. She went through all of the symptoms your loved ones went through and are going through. Each day was different and all I could do was say a prayer for strength and health for me so that I could continue caring for my mother. It was exhausting for me and my family but I'm sure it was 100 times worse for her. My mom is at peace now. I'm a woman of faith and feel at peace knowing that she is now walking, talking, smiling and eating again. My suggestions to you are to take each day as it comes. Find rest when you can, even if it is for 5 minutes. Take a deep breath and enjoy the time you have with your loved ones for it goes by so very fast. God bless you all!
Heady I am so sorry you are going through a bad time. It is almost unbearable isn't it. All I can say is that I know exactly how you feel.
As far as practical things are concerned ...... Have you thought about putting some furniture into storage temporarily.? We have had to have some things stored in order to accommodate all the extra equipment. It does cost money though of course, but it's not too bad if fairly short term. Also, go and have a look at some WAVs (wheelchair accessible vehicles). If you Google them you should find some dealers in your local area. We have a VW Caddy and D rides in the wheelchair in the back. It has made it easier to get out and about now that we don't have to transfer into the passenger seat, although I have to say that it is still quite a performance to get D out of the house and in and out of the car. We weren't able to get finance for the purchase as the motability scheme is only for those of working age. You cannot apply if over 65 which seems pretty unfair to me. We managed to get a second hand one though with some help from the family and by selling the existing car.
Try to keep going - get some sleep and hopefully tomorrow will be better.
Hi Heady thinking if you and feeling very sad for you, it is so hard, some days, you just want to run away and never come back, but we do come back and pick ourselves up and start all over again.
I have moved stuff all about, we have got so much equipment, I brought a plastic large storage shed and I store quite a few things in there.
George keeps complaining that his bottom hurt, no sores on it, he seems like there is no fat left there, and he gets so uncomfortable lately.
Careers came in to put him to bed tonight after they left he started throwing his legs about saying he could not sleep, I asked him if he would like to get up, but all I could get out of him was he could not sleep, when I went back into the bedroom, there was this horrible smell, he had messed himself, took me ages to clean him up.
Heady sending you a big hug, and to you all we are going through this journey together, family is helpful, my brother and his wife are the best, my brother has been down again and my sister in law and myself went off for a week again, came back yesterday, but feels like weeks ago.
My eldest daughter has been very quiet recently, can't get out of my mind that something is no right, but they are all saying everything is fine, but I know it is not, another worry for me.
Also Heady DN said if we needed to go for blood tests they could come in and do them, saves a lot of hassle. Sending you all a big hug Yvonnexxxxx
Don't you just hate these gut feelings???? I wish I could be wrong occasionally! But rarely am. Hope your daughter is OK. Could be she is worried about you and doesn't know how to help, so feeling very guilty.
Where have you been? Please tell me, it was hot and sunny.! Oh I have missed our trips to South Africa. To see the sun and feel it's warmth. Although I am lying in our conservatory, with the sun pouring in, but that feels like cheating. Still nice though!!!
Managed to get to the hairdressers today, A mixture of Marie Curie sitter and my sister. So feel a bit better!
Heady yes we went to gran canaria it was hot, had a lovely time. Heady problems at home, I knew she was not good, well will be there for her, and my beautiful grand daughters. Hope you can get away to somewhere soon. Sending you a big hug xxxxxx
Oh Heady, you sound as though you have hit the wall, again and again. I can only agree with everyone and offer my virtual support. Just put M into respite at Llandudno hospice for a week then left, so I thought for a couple of hours to do some shopping and get a cat nap, no some idiot tanker driver dumped about 6000 gals of toxic chemicals on the A55 and I was trapped for over 4 hrs, then return journey took 2 hrs, normally takes 25 min. M asleep on return but choking they had not raised her bed head and were most apologetic when I pointed out they said she should have pressed her alarm I said she probably no longer had the coordination. I need the time out to sleep not sit in traffic jams.
On adapted vehicles if you do not want to get Motorbility try 2nd hand dealers. Google "wheelchair adapted vehicles for sale" a few companies I got mine part ex (not so old car) from "wheelchairadaptedvehicles.com". They deliver a demo for you to try but there others. I got a 4yr old Renault Kangoo under £8k with less than 10000miles on clock. The passenger seat is high enough for M to perch on and while i swing her legs in or out. Wheel chair in rear and ramp to access wheelchair, next step which is coming quick will be M in her wheelchair in the back a bit of a push but straps help.
Anyway it may be that you and S have decided to fight to remain at home. I am not that strong and after not being able to find any nursing homes with respite for 6 months and being exhausted have gone to one nursing home with a good reputation and close to M's mum (97 and still going well) and put M on their list for full time care. It is a decision I took with a heavy heart but I know she needs more attention than I with the Carers can provide at home without me ending up in a hospital through exhaustion or heart attack. By the way she is still 10th on the waiting list and they don't expect her to be in with them before mid summer.
I appreciate what a tough decision it is when you have to come to terms with the fact that you just can`t provide the care required at home any longer. However you know that you have given the best you could for as long as you could and that is all any of us can do.
When I visit P daily I can monitor any lapses in care (not many!) and I am no longer the screaming harpie I had become at home. We now have the "quality time" I was told would happen. Of course it is still heartbreaking when he has a moment of mental clarity and asks me to take him home, but I try to gently say that while he is ill, the best and safest place is where he is. He does know he is ill but does not seem to be aware of the true state even though he has been at all the meetings with doctors, neurologists etc.
All we can do is be at ease with what decisions we make even though they are so tough - do the best you can even if it is not easy !
Thanks NanBabs, nice to hear someone been down the road before us, it is such a lonely decision but one my brain says is needed while the emotions are still unhappy. Very similar feelings to first couple of times in respite.
Hi Tim, doesn't frighten you, how small things, (not that sat in a traffic jam for 4 hours is little!) throw you. I expect it took days to recover.
I think I am in the same camp as you, regarding nursing homes. I don't think I will be able to carry on much longer. I don't want S to die, with the sound of me screaming and shouting at him, which is all I seem to do now! Thanks for the car info. My car is on leasehold, which is coming up for renewal, in a couple of months. So need to make a decision about what to do about it. This is a blue job, I only do pink ones! Although most jobs or decisions have a distinct dark colour these days!!!
Actually got through yesterday, without a crisis, no unplanned visit from DN or GP. Waiting now for the doctor to arrive, arranged visit! I can't get S out anymore for appointments, on my own! The stress and effort is intolerable.
Tim, I know I have said before to you. Don't feel guilty for the decision you have made. I too, missed the class, where it taught you how to care for a loved one! Perhaps it should become part of school lessons, under the Domestic Science umbrella!!! Let's face it, with no money for Carers anymore and nobody to do it anyway, we are all going to have to come to terms with caring for the eldery at home, so will have to learn how to get our hands dirty, or should I say, how to keep them clean!!!
Hi Heady I'm so sorry that you hit this frightening spot again. As Kate said we are listening and we hear you. I'm sending you lots of hugs and a large hanky. Please take your own advice and look at one day only NEVER wonder as far as two years ahead. Heady you are in my thoughts, tomorrow must be a better day. Love maddy xx
It is beyond awful for the patient and slowly kills us, the carers!
I doubt I have any helpful words because I think you just have to "slowly" get through the worst times!
If it helps (which I doubt) I'm totally fed up and equally don't really know what to do apart from pack a bag and run! (Not joking) I'm even looking a renting somewhere miles away so as I can do what the rest of my family do and ignore it!
But really, that's just a beautiful vision that won't come true because I don't think I can actually be so harsh!
In the meantime, I just pray for this all to end (I'm not religious) but I don't know how much longer we can all cope.....
My heart goes out to you and every other sufferer and carer of Psp
If we lived near I'd call on you with a litre of wine with chocolates and flowers
That would be nice!!! I know we have all said this before. It would be lovely to meet up in a relaxed space. I do enjoy going to the PSP meetings and get a lot from them. But to be able to sit around, glass in hand and just chat (and laugh) would be special!
I'm so sorry for you both. This illness brings out despair and frustration so deep I wouldn't have thought it possible to feel at this level. I look at my mum who had had PSP for about 5 years. Her life consists of sitting in her chair all day. Dad's face is one of exhaustion and despair. If we take mum out in her wheelchair she doesn't enjoy it.
I pray she doesn't go on like this for much longer and then I feel guilty hoping that.
Dad got a mobility vehicle that we put mum in in her chair from Clarkes mobility. I think they're on the Internet and ? in Kent.
Oh Heady, my heart bleeds for you. This illness is so tough on both of you but (see my reply to Tim) you have done your absolute best for as long as possible and that`s all any of us can do.
You must make the hardest decisions of your lives - by yourself - and that is so difficult. If you can rest easy in the future and know that you did the best you could, what more can any of us do ? Life really stinks sometimes doesn`t it ?
After all the love and support you`ve given to the rest of us, here`s some back to you.
Hi NanBabs, I did read your reply to Tim and totally agree. I don't want my last memories of S, to be me shouting and screaming. Which they are at the moment. I have put in a request for extra help. The doctor and DN's are now visiting me, well , I am sat around waiting for GP! I don't do patience, waiting for other people, is not my idea of fun!!!
S goes back into respite in a couple of weeks, for two weeks this time. I would be looking forward to it, apart from the fact, I am having serious work done on the house, so will be exhausted, by the time he comes home. Hopefully, though, the new hall way, will be worth the effort.
The first thing to help us was a Re Turn, then a wheelchair and a car that takes a wheelchair,then ceiling hoists in the living area and th bedroom for the days when the Re Turn can't be used. aLl these things were arranged with the OT's...and don't forget the hospital bed another invaluable piece of equipement.
I know that I would have felt pretty desperate without each of these things and I would tell anyone else that some of these things take a time to arrange so to apply for them before needed.
At the beginning, I use to get so cross, when each problem came along, equipment was thrown at us. Thought, it's not equipment S needs, but help to be able to do said task. Now, of course, I realise, they were right. We are really getting some help from the Re Turn, great bit of kit! Wish the wheels moved better, doesn't like carpet! Or the tiles on my bathroom floor, but nothing is perfect. At least it has helped S get on and off the loo, which was getting to be a huge clashing point for us!!!
I hate to say it but your not alone, you know that. I haven't posted anything for the past 2 weeks since they have been hell for me as well. The aides has not been here for the last week and all I hear is bull when i call the company. I am so freaken exhausted that I can't think straight anymore. To add insult to injury I keep on getting bills from the VA, for what I don't know. They also took $156 out of his social security this month which has left us nice and short. D is getting worse and if I don't get some sleep I don't know what I am going to do. Love you sweetie and remember I am always with you.
Oh Audrey, you too feeling like a very muddy,old football!!! Why, when things are so hard, do others feel they have the licence to kick you as well???? I know that tirness feeling! S sleeps like a baby, it's me that can't relax and sleep. Can barely crawl to bed, then ping, the light goes on and that's it for the rest of the night. Think it was about 4.00am, that I finally nodded off last night! After various pills.
I know I am not alone, that everyone here is supporting us both! I just wish S's medical team, would show their faces occasionally, before the crisis!
Just had a brilliant idea, we could all do a mass, group walkout and disappear into the blue, with all we have learnt to deal with we'd get on like a house on fire!
Im sorry to hear that you are going through such a touch time.
Im a carer, and I was looking after a lovely gentlman for almost 7 years ith PSP, untill the very end.
He had a lovely wife, but she also got very tired a stressed, it was getting a bit too much. Then she got me and another live in carer ( we rotated 2/3 weeks on 2 weeks off) and after a little time ( once she trusted us of course) she started to enjoy the life again. She went out with friends at least 2x in a week, went for holidays for couple of week, we took full charge and responsibility for her husband. Of course he wasnt happy, but to compansate it and to make him happier, we planned trips together ( of course had to have a second carer with me, due to toileting and trasfers) even he was incontinent and whheelchair bound, we planned special menues ( meals that his wife didnt like, we cooked when she was away) and had his friends and family around - simply trying to keep him busy while his wife was on holidays.
She got more energy, was less stressed ......but she could live her life again, and maily she could be a wife, not a carer!!!
So there is a way for you to take it easy, and let other people to take the responsibility, its all about finding the right people ( in my opinion) to help you to have a bit of life again.
Janette, thank you for your very thoughtful reply. It's certainly something to think about. Not sure I would like someone living in, but it would be great to have someone, just office hours would be nice. I do have Carers coming in the mornings to shower him, then Monday and Friday, they sit 10-2pm. I have asked for evening Carers to put him to bed. It's the little things don't get done, I haven't time to mental stimulate S, or the energy now, to take him out. The house needs attention, my diary needs organising. I have a cleaner and a gardener, but they are only here for a short while. As for something for me, who's that????
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