Bluntly and too the point!

Hi all

Another rant, apologies in advance!

Today I've finally accepted we won't be able to get dad out of the house anymore, being bed bound and needing hoisting and then having a wonderful all singing and dancing wheelchair that is too big to get out of the house due to access!

Unfortunately dad has realised this today along with mum! Lots of tears all round!

I'm also realising that I'm very quickly losing MY Dad! Mum is realising she's losing her husband and Dad is realising everything is slipping away from him 😓

My dad is not looking like MY Dad anymore as his face and body changes, his face seems to be changing shape! Sorry to say this but dad is looking very disabled, love his heart!

In the meantime I'm literally losing the will to live and sick to the back teeth of everyone telling me to keep strong!!

How am I supposed to keep strong witnessing this bloody horrible illness??!!

Psp I wish to god you'd just sod off and take this awful and unbearable pain away from us all!

All I want is for my dad to sleep and be at peace because the fight in him is disappearing and let's be bloody honest we can't fight Psp it just over takes the poor people that have it!!

I just had to write down my feelings because once again I feel totally alone on this awful shitty journey

My heart goes out to you all x

74 Replies

oldestnewest
  • It is shitty!

    And you are having to deal with his loss, your Mums loss and your own

    Rant away!

    Its horrible.

    Hugs

  • Thx u Kevin

    I actually think it's a killer in different formats all round for everyone

    X

  • Oh Satt2015, I hope you can feel my arms around you, just let go and cry for five minutes, longer if you need to, I will only let go, when you are finished!

    I don't know how we keep strong. I suppose you do, because there is no other choice.

    I remember when my Dad died of secondary liver cancer. He was rushed into hospital with a clot on the lung,(sorry, can't spell the proper name!). My sister asked me if I thought it was serious and the end was close, I replied "I hope so!" He died a few hours later. Dad (and us)was very lucky, he was saved from the trauma of the last few weeks of this cancer. He died, still having a tiny bit of life quality, only a few days before, we had a family party, that he was able to take full part in. Our loved ones, well their life quality is ebbing away very fast, yet we know they could still last for months if not a year or two. Yet people still recoil from the BIG C. Money pours in to research. We all have to die of something, it's the law of nature, so why not try to stop these illnesses that degrade the person SOOOO much. There really can't be anything worse than PSP.

    Please don't apologise for ranting at at time like this, if you can't freely let off your feelings to those who love you, now? When can you????? So keep ranting, we are all hearing your cries and are doing our very best to send comfort across the ether! You definitely are NOT alone.

    Lots of love

    Heady

  • Thx u dear heady!

    You are really quite amazing!! And I totally appreciate your words!!

    Big hugs X

  • Wise words xx

  • Well said Heady. XOXO

    Nikkie

  • It's unbearable isn't it, witnessing a person you love lose all of their faculties, so so cruel, I really can't see the point in going on at times, I understand exactly how you feel, I feel like saying sod off to everyone at the minute, nobody can make things better so why bother with all the visits?

    It's all so overwhelming, I feel like I'm going insane at times!

    Sorry I'm ranting, I need a break from all of this and it's taking so long for a panel of people who don't even know Keith to decide whether he qualifies for CHC, now if the shoe was on the other foot? We all know the answer to that don't we!

    I'm thinking of you and your Mum....

    love and hugs....Pat xx

  • Thx u pat

    I'm with you all the way!!

    I do hope the chc gets approved they truly couldn't make it more bloody difficult in what is already an impossible situation X

  • Me too, Pat...

  • Took me two years of fighting for CHC one assessment meeting after another We lost the first one and had reapply .

    We have had it for three months now and I am dreading the follow up assessment . .

  • I didn't know they did follow up's??

    Surely they can't take it away because we all know Psp doesn't improve!

    X

  • hi i agree it s brought tears rolliing down my cheeks theyre not from fthe fall I've just had either

  • Awe bless you jillian

    How are you after your fall? X

  • PSP yes is a horrible disease, and it's terrible to watch are loved ones suffer, I realize at times it's so hard to. Be strong because we all feel like screaming and just running away from it all but then realize we can't do that so we cry buckets of tears.thinking of you. Nettie

  • Thx u nettie

    Big hugs x

  • Unfortunately you are not alone Satt2015 as all of us on hear feel the same. Take strength from the happy memories of your Dad's life and the good times you have all spent together. My Dad's eyes say it all. I have faith that he knows we love him but I also know he is saying he just wants to be well. Bloody disease. Sending you a hug x

  • That made me cry loads

    Bless you x

  • Hang in there. You have one blessing, you have time to just love him. He will be so pleased to see you, tell him jokes laugh with him and Just love him. I used to read to my husband. He really enjoyed that. It is a horrible cruel disease. Make the most of your time with your Dad. You will never regret it

  • Thx u Gill x

  • My husband died earlier this year, we were all devastated, but in retrospect glad he didn't hang around too long, we miss him dreadfully but we have a wonderful memories and we use that to help us through the dark days. Please rant all you like. Everyone on this site will totally understand. I am typing up my diary over the last 3 years and will present it as a blog It... May be helpful for others.

    Hang in there for him

  • Awe bless you darling

    My heart goes out to you and yes please I'd love to read X

  • Know exactly how you feel. You have just written how I am feeling.

    Its unbearable but we have to bear it.

    Join in the hug.

    lots of love, Jean x

  • Thx you jean

    Heartbreaking all round

    Big hugs x

  • As usual I cannot offer anything practical except that letting you know your feelings are being read lets you know you are not so alone.

  • Thx u x

  • This is the best place to come for a rant . Hope it made you feel a little better lol ..

    Things change from day to day.and it's cruel for everyone . .

    Some days you cope better than others . Sending you a big hug xx

  • That is very true cabbage cottage

    Big hugs X

  • I echo what everyone has said. Unfortunately, however much we rant, and we all have to sometimes, it won't change the situation. So is there anything we can do to make it more bearable? We had a similar problem with access. We can't get the chair up the front steps, the side entrance was too narrow and the back door too small. I decided to spend some of our not huge savings as we can't take it with us. We had the perfectly good French doors taken out, the threshold lowered to the damp course and a wheelchair threshold put in. We also had a huge amount of soil removed and the side entrance widened at the bottom enabling space for the wheelchair to turn. Our garden is on different levels so soil had to be held back and to save money I got the builders to put sleepers in and I treated them with wood preserver myself which took ages.

    I know not everyone can do this and I feel very sad for those who can't but I knew my husband would give up and I would find it hard to cope if we were stuck in the house. At the time it seemed like a lot of work and I even cotemplated having a totally new door knocked out in a different place.

    We all have a lot of sorrow in our lives at the moment. My husband can't do anything to help so it is up to me to make his life as bearable as possible which I do by taking him out to meet people or invite folk in. He still manages in his way to join in the laughter. Caring can be a very lonely experience, dispite people walking in and out of the house, loneliness can lead to depression and anxiety, we all need people who can lift us up and good company and laughter can do this. It must be very hard for your mum and I hope she can get out and relax with friends or invite them in. Our sons know I need cheering up when they come so they spend time talking to their dad, relating interesting things that have happened to them and being as "normal" as possible.

    Staying "strong" is difficult, I know but if I don't, the alternative would lead to a very miserable existence for my darling husband for however long he has left with me.

    Keep writing your feelings down if it helps. We all have to do things in the way best for us as individuals.

    I hope you and your mum find something you can laugh about today.

    X

  • NannaB you made me cry!

    Wise words as always

    Hugest hugs X

  • Sorry! Don't like making people cry.

    Big hugs to you as well.

    X

  • Bev. you are an example to us all.

    Last night Chris woke me at 3.30 and by the time I'd settled him down I couldn't get back to sleep. Eventually I got up and re-arranged the living room as suggested by our son so we have a good view of the garden and less cluttered for Chris. Unfortunately it means I have blocked a door so we have to enter via the dining room. But I feel pleased. It was better than stewing and feeding my resentment !!

    I find I always am close to tears when people are unexpectedly sympathetic. I keep getting cuddled by the community nurse and physio !!

    Personally I really struggle with resentment. I feel I'm losing a battle. I think I can't accept I'm going to lose this battle. I feel that Chris has given up and I'm fighting for us both. Acceptance is hard.

    I'm lucky to have lots of company and laughter with friends and family but its a lonely marriage, isn't it ?

    love to you both. I'm looking at my French Window now with new eyes !!

    Jean and Chris xx

  • Dear jean

    I relate totally I feel like I have to keep strong for everyone (often badly or with 🍷)

    The carers whom I don't know from Adam often embrace me with a hug because I burst into tears (not in dads earshot)

    I can't be bothered with friends at the moment cos I don't feel they understand, why would they?!!! But actually makes a harder and more lonely situation!

    I'm having counselling via the hospice approx every 2 weeks but actually think daily wouldn't be a bad thing!

    Crying as I type again realising how shit this sounds!!

    Huge hugs x

  • Its hard for you being younger. Your friends are at a loss. I was a counsellor and my friends are trained counsellors and we are all about 75 plus. It doesn't make the journey easier but makes it more in the "normal" range.

    I saw a counsellor weekly for 12 weeks and will return soon. You really need at least weekly. Wish I lived near you.

    All your pain is normal but that doesn't make it easy. You are carrying a huge burden. You are doing really well. Hang on to that. You won't get it right all the time. None of us do. You are there. That means so much. You can only do your best.

    Love and hugs, Jean x

  • Thx u jean

    Perhaps you could be my daily counsellor lol

    I don't feel young more like 107!! X

  • I know.

    xx

  • Oh poor SAT i'm so where youare...except my only counselor is ya'll and Jesus. And I feel ashamed of my faith as once again it's sagging like an old roof about to collapse under the pressure of all the rain .... Andrea , If youre a prayin person get on your knees...know God really is there....I'm so ashamed I don't feel "safe and seciure from all alarm" like one should when we lean on Jesus.......I'm sorry God.......I;m spinning from sinusitis and spinning from sadness and spinning from self pity.....

    God shut up, andrea shut up!!!!

    i need more than virtual hugs but please nobody leave me

    avb

  • Hi Jean, I hope you have a better night tonight but you were very productive in the early hours. Colin loved working in our garden and I pull his bed over to the French doors so he can smell the flowers and hear the birds singing.

    I never get hugs from professionals. I think I'd probably cry if I did. I do get hugs from friends though but they know not to be "nice" to me. It's the sort of normal hug any friends give each other. I've found that several folk who have known us for years have drifted away. I think it's because they can't deal with the change in Colin. They are friends who I ended up having to comfort as they left the room in tears so I'm not really sorry they don't come round. It's bad enough coping with my own sorrow without dealing with theirs. I'll be very annoyed though if they come back to me when C has gone. One group of 7 friends are widows. They all nursed their husbands until the end and are funny, matter of fact women who know what it's like. They invited me to join their wine group a couple of years ago and I only knew one prior to PSP. They all knew Colin though as he joined the U3A while I was still working. We ache with laughter after a few drinks.

    You are right about the lonely marriage. When I turn Colin in his bed and roll him towards me with the bed raised, it is a good position for a cuddle. He can't cuddle me but he does still manage to get his hands on my boobs and I pretend to tell him off. He seems to have a twinkle in his normally dead eyes when he does it so my husband is still there.

    I've accepted I can't win the battle. Colin is going to leave me, or I may go first so every day is going to count. There are very grotty times, sad times, frustrating times, angry times but there are still some good times for both of us and they are the times I want to remember.

    Sleep well tonight Jean, or switch LBC on the radio, that always sends me off in less than 30 minutes.

    Lots of love

    Colin and Bev

    XxxX

  • You are right. We still have plenty of good times as long as I don't compare them with what we have had. Chris, of course can still communicate and make eye contact. I get cross with myself for wasting this precious time bewailing what is lost but I am only human !!!

    This on-going struggle with the convene is creating problems for me.

    What happens with the professionals is they ask Chris how he is and he says he's worried about me. We both get tearful and it gets to them. I think its a sort of Derby and Joan thing.

    Our friends have been great but because of our Life -before-PSP they don't mostly live close. One friend came last week and stayed with him whilst I had a day in London with another friend. She came the day before to practice toilet technique and wiping his bottom! Fortunately Chris is completely un-fazed by this !!!

    I have a lot to be grateful for but sometimes its hard to remember !

    Enjoy the sunny moments in the garden tomorrow. Isn't it a lovely time ?

    Love, Jean x

  • Let's hope for a bit more sun tomorrow.

    X

  • What a lovely friend you have . Other than carers I have no one else who is available to do tye personal needs

    My daughter finds that very difficult . She copes by treating her dad as if nothing is wrong , He enjoys this . She is still his little girl although she is fifty . In fact when he started not going out and spending his Pocket money !! He enjoyed givn her som pocket money on a Friday .

    O course she didn't expect it or wat it but thanked him and told him she will out that to one side and it will pay for her car parking in working

    He never fails m noI to make sure I haven't forgotten to give it to her .

    Because of this I cannot leave John for longer than three hours .we have carers and a sitter

    Today I came back home and John was in bed , I had left him in his chair .

    When the carers returned midday they commoded him and asked if he wanted to go back in bed which is fine but they had hoisted him diagonally across the bed nearly flat on his back , his legs straight out , they didn't think to raise the knee park even .

    He was like a crab on its back jumping and jerking .

    I had been up since 5.am trying to clear his throat of mucus he was finding it hard to breath !!

    Maybe I expect too much of them , I Dont think I m a picky bossy person but when I see something I am not happy with I usually say , can I suggest you do something this way , it's what John is use to . I can see the glances between the two carers .

    I know they have procedures to follow . It's the way they have been trained but no two clients are the same . I had been doing all the caring myself until three years ago .

    I am not critising , but saying I know what's best for John .

    They put the sling on to loosely, he isn't supported properly around his waist and it pulls under his arms . He doesn't complain .

    It's the little things that make a big difference . The sling can ride up when hoisted down so. Once he is hoisted on the Commode and he is finished I always make sure the sling is pulled back down and re tightened . Only takes seconds .. that way they can then place him more comfortably back into bed or his chair .

    Today the carer asked why I keep a slide sheet on the back of his chair .

    I put it there so that when he slides into the chair his top doesn't rise up his back and the blanket I keep over the pillows doesn't crumple either . I thought it was common sense . It is the little things I

  • Yes my friend is very practical. Our children so far are cautious about breaking the barrier of intimacy. I'm sure they would be ok and so would Chris but so far we manage by preserving the usual barriers.

    Chris is still pretty mobile.

    All will change, I know.

    xx

  • Although you realise things can progress . It progresses differently for everyone .

    Try to go with the flow I know that's easier to say then do but we can't change anything , only learn the best way to manage it .

    That's from experience I tried to fight it

  • I'm giggling amid the tears, Bev. B and I still share same bed. I was awakened last night by his heavy breathing, I imagined we were dancing to the rhythm of his breath....It was nice....til I woke up to him peeing on the floor...The bedroom...not the first time but he told me the next day he was on Napolean's ship(????) Hey when you gotta go just sling it over the side and voila!!!! hahahaha

    oh well I guess pee on the floor was worth sailing with Napolean . eh?

    avb

    keepstrongkeepstrongkeepstrongkeepstrongkeepstrong

    This new normal has gotten very old. And B has many more years of this. keepstrongkeepstrongkeepstrong

  • It's so good to start the day with a laugh and I am laughing AVB. You probably weren't when you looked over the side of the ship. Good job the wind was blowing in the right direction or you may have got it.

    It's good you can still share the same bed. We finally got singles pushed together as C would turn over......straight onto me. I was fed up with getting up and walking round to get into his side as he couldn't move back. The first night of single beds, I had pushed them close together and I woke in the middle of the night with him laughing. He had turned and somehow managed to get the whole of the right side of his body wedged between the beds.

    We do have " fun" don't we.

    I hope you stay on dry land tonight.

    Youtooyoutooyoutooyoutooyoutoo

    X

  • Bev do you know of a sit in sling and that the arms are inside , which can also be used for toileting ????

  • Sounds like Colin's. His arms are inside and he stays in it when on the commode. It's a Silvalea Fast Fit Deluxe Sling. I've been in it and felt very secure and comfortable. It's very light like airtex with tiny holes.

    X

  • Sounds just lik I need , it goes though me when they thy hoist him and he is suspending for a long time with it cutting under his arms

    I did tell you I never do I use my stool , the the mirror and light . I only need that if he is very much and sure . I manage perfectly well just reaching under and creasing front and back . I a, so lucky he isn't incontinent ,

    His bowels have improved as well since reducing his Meds .

    We will prob have the three month reassess for CHC . I a,mworried cos he is a bit better than he was. I could bare to go through all that Stress agAin.

    I have met the CHC OTs yet . , I have great difficulty keeping making John comfy in his chair as well . I a,sure he would have a much better quality of life it he had one more suitable .

    The one we have wax made for him . But he is different now .

    Because his head falls forward and body curls down his neck and back are v painful and heavy.

    Th only way to hell is for him to lay back but that causes mucus collection he made a mouse last night and I hot up he couldn't breath I have tried rolling him on his side tonight but it's awkward do him .

    When I lay his chair right out his legs are sticking out straight. He cannot move at all then .

    How is colin and you of course be. . I never hear you complain or about colin

  • I'd speak to the OT about the hoist. It shouldn't cut into him. I can understand your concern. I know what you mean about the chair as well. Colin frequently slips down in his which means I have to keep hoisting him back up. He spends more time in bed now as I've had an extremely painful back and adjusting the sling around him to hoist him has been excruciating. I thought I was going to pass out the other day. It's not so bad now thank goodness. Heat pads and painkillers have helped. I think a lot of it is tension. On Monday morning it was very bad but I was determined to go out to lunch with 20 others when the sitter came as it was paid for. The journey in the car was very painful. I didn't have a starter as I knew I'd be late waiting for the sitter. Within 15 minutes of arriving, someone cracking a joke as I walked in late, the pain went. I had relaxed and was among folk I know (the U3A art group). The next morning I had a job to get out of bed. Two friends came to lunch yesterday, bringing it with them and again the pain went. Still niggling but not the I'm going to faint pain.

    I can get C into a sitting position easily as I put the slide sheet under him and tilt the bed so his feet are high and head low so gravity slides him to the top of the bed and then raising the head sits him up. It's also easier to clean him up if he is in bed and "goes". How does your darling tell you he needs the commode? I've tried to show C ways to tell me but he can't. I still don't know if he is aware of when he needs to go.

    I do rant and rave sometimes, like everyone but I have one thing I can thank my not very motherly mum for. She was a very emotionally needy person herself but with me it was "pull yourself together, there is always someone worse off than yourself, stop crying, I don't want to hear it, she would tell me every little thing that she was angry, annoyed, upset about but couldn't cope with me doing the same. When I am, I can still hear her telling me off for feeling sorry for myself and telling me to get out of her sight. My dad would make everything into a joke and I have inherited that for me but I am not incensitve to others like mum was.

    Have you got a pump to collect the mucous? It does help a lot.

    Off to have a nice hot shower now as C has gone back to sleep.

    I hope your day is not too hard Cabbagecottage.

    Lots of love

    X

  • No still not got a pump . Last night I managed to roll him to one side , the same side as his head turns . I think that helped his throat .

    I am glad I am not the Only one who throws a wobbly lol .

    I did when the carers were hers yesterday .they come in as if everything is ok ,

    Often apologise to John. I know he understand but I so don't want to make him think it's his fault.

    What sort of slide sheet do u use. I don't tend to use them now. Only to help slide into the chair . The carers use the house . Of course you haven't got the overhead hoist have to .

    Is it the two slide sheet against each other or one on a roll .

    My back and neck is the same , my head drags down and is heavy which is very wearing. t least if helps me kno a ,title how John must feel .

    Johns speech had Improved since I reduced his Meds , not perfect or all the time but in general can make himself understood more . We do have wee accidents if he is very switched off but luckily bowels More normal now .

    I am so tempted to stop the Sinemet altogether but afraid. Won't see the nurse until August .

    How long can you go out for with colin in the wheelchair . John isn't stable enough to go in the wheelchair anymore . His feet haven't touched the floor for three years .

    Everyone is so different

    I have had him out of bed onto the commode o do that when I get up , put eys drops in give a drink and Meds clean his mouth and nose.

    He cannot use his hands

    Carers should be here around 9.30 too late really but when it was 7 am I found it too early I never get to bed until late then they come back around 1 pm. Next 5.30 they just commode if needed and change and freshen his top half at 5.30. I prefer to get him inti bed .if he is still up , it's mostly his best time of day .

    I can only feed hi when he is alert enough and awake so I have to make gay while the sun shines .

    I shoot my self in the foot. I still do most everything . Really I only have the carers in case I suddenly became unable to do so ,I am always going behind them ,

    Although I have been up since 7 he hasn't had breakfast . He has dropped off again and I know if I start giving it the cares will arrive . It's not good then if they are going to start hoisting and rolling after he has just eaten is it , it's the little things like that they don't think about

    It's still not such a nice day here hope it's nicer with everyone else

  • We have both kinds of slide sheet but I prefer the single one on a the roll. The others have handles but I find them difficult to pull out from under him without getting the hand holds caught on him. I use the sheet every time I move him in the bed. It is very easy to turned him from his back to his side as I can easily slide him to the side of the bed, giving room to roll him onto his side.

    I had shoulder straps put on the wheelchair and it reclines so I can take him out for several hours. The lady from HENS came on Tuesday and I told her we went to Hastings and I PEG fed him on the pier. She said she will write a prescription for a back pack that fits onto the wheelchair so he can be fed anywhere without me having to do anything once it's set up. I've stopped going to darts and Kurling (in a hall not ice) as they are too early to get C fed at lunchtime. With a back pack he can sit and watch while the food slowly passes down the tube. More freedom for me so can't be bad. If you really want to stop the Sinemet, give the GP a ring instead of waiting til August. All the professionals liaise with each other now.

    I don't have carers between getting up and going to bed. As I get a good night's sleep apart from Saturday night, I prefer to go it alone during the day so we can go out or I can have friends round without anyone else here. On 28th I have the wine group here. Our normal night carer will be on holiday so at 10 pm I have a new one arriving. I wonder what she will make of 8 happy ladies after they have "appreciated" different wines. the group doesn't usually break up until well after 11 pm. We go to each other's houses. If elsewhere our son sits with C until the carer arrives. Our normal carer knows him well now but I thought he'd better not show a new one in and then leave her without me there. I'll have to do yet another long explanation of PSP. Better make sure I don't drink too much. I don't want her writing in her report that she was greeted by a tipsy wife.

    The sun has now gone in and a black cloud is looking angry.

    X

  • Bum I just did a one message and lost it . Will try Again later !!! Always doing that lately

  • lol brilliant if you don't laugh you will cry

  • I wish I could share the same room John is downstairs now .

    I had moved so many beds around and get rid of while he was still upstairs that I was left with a old single bed for myself or the king size , I bought a new four foot bed instead for myself . Plenty of room but not too much .

    Our house is quite open plan I am only at the top of the stairs above John with a baby monitor so I can even hear him breath .not the same though and a bit of an effort if he needs me in other night ..

    I do use his stairlift in case I am half asleep . Well not in case . I am lol

  • Make a note of how many times you are disturbed in the night. It may help the CHC claim. It did ours.

    I miss not having C next to me at night. A couple of weeks ago, in the afternoon, I was very tired and just for fun, asked C if I could get in bed with him. His thumb immediately went up. I slid him to the side of the bed and climbed onto the air mattress beside him, which isn't easy as you will know if you've ever tried it. As it's only a 3 ft bed, it was very cosy so I pulled the side up incase I fell out and very soon went to sleep. The trouble started when I tried to get up. It was easy pulling the side up but to get it down I had to pull the button at the top of the bed. I was lying on my back, wedged tight between C and the side and couldn't move. Every time I put pressure on the mattress to try and turn, the air in it moved. It's like a water bed. Eventually I managed to turn onto my side but it took ages to shuffle up the bed enough to reach the knob of the bedside. C was "laughing" and so was I. I had my phone in my pocket and I was imagining what the paramedics would say if I dialled 999. I don't think I'll be doing it again which is a shame as it was good being close to C again.

    X

  • Oh, you do make me laugh, Bev !!

    Chris and I had this mental picture of you and Colin drifting off, tucked up in your little cradle. Its like a fairy story.

    I wish you'd called the paramedics. Just think of the pleasure they would get telling the story. If they'd taken a video it could have gone viral !!

    love Jean and Chris x

  • Ahh!!!!! What a thought. It's made me go hot and cold just thinking about my embarrassment. May have been worth it though if I'd got lots of money from advertising companies...perhaps not!

    X

  • money couldn't but what we really want could it ?

    x

  • Rant ON! This disease SUCKS! It is a thief--robbing away one piece of my guy at a time. Everyone here gets it and it's okay to just rant. I never think about how my (our) kids feel as they see their dad becoming so weak. Three of the four don't live at home and the youngest leaves for college in the fall. Imagine how they feel seeing their once courageous, unstoppable, super hero father now slowly falling apart. Sadness! I am glad that you are sharing your thoughts and feelings with us. Share every minute possible with him while you can. He knows you love him. Keep sharing.

    Hang in there Satt2015.

    XOXO

    Nikkie

  • Breaks our hearts !

    love, Jean x

  • YESSSS! I watch my kids hug their dad as if it is the last.....We talk only of thier days and what book dad is listening to, I don't want to unload on them and yet that's all I want to do. They are strong but how strong we are all walking on this fragile membrane callled life. I don't want to cause a depression in them. They are doing well I don't want to take that away from them.

    avb

  • Abirke

    I feel the same way--try not to give them all the horrible details. I want them to enjoy life the way we have up until PSP.

    Nikkie

  • We have all lost our original lifestyle along with friendships . Most of mine have died now , I lost five within six months .

    It Was at the same time as we started this road ! I did find it hard , as if the ground went from beneath my feet .

    I have made a younger friend recently , unfortunately for her through the death of her husband .

    big hugs from me to all of you . Xx No crying now lol.. Onward and upward

  • Words fail me

    X

  • It is hard when friends leave us Cabbagecottage. When my best friend had a heart attack it affected me more than when my mum died. Even now, years later, when something happens I think I wish I could go and tell V. She only lived a few doors away and I had to pass her house every day when I went to work. I'd cry every time I passed her house for months.

    I'm so pleased you have a younger friend and one who can probably show empathy due to her situation.

    Sending you a great big hug. I hope the sun is shining where you are. It is here at the moment and everything seems much better in the sunshine.

    X

  • Yes ! My really close friend died suddenly last year. I miss her so much because of her humour and we had shared so much [ before I met Chris ]. I still want to talk to her.

    Its loss all round as you get old anyway !

    x

  • 😢 big hugs

    X

  • Cc, like SAT said, words (of encouragement) fail me.

    I lost my mom months before B was diagnosed. As a child, was ping ponged around...I guess I always knew she was somewhere so I did not miss her much....Now that she is really gone, I miss her terribly. Today is a new day. I refuse to go down the road of self pity....

    Onward and Upward, amen

    AVB

  • My sentiment exactly!!!!!!!!!!! I say stay strong and cannot get myself off the floor.....

    I touched the hand off a male nurse the other day who was taking care of ME! All I wanted to do was hold on to this stranger as somehow he rescues me from my abyss.....It was not sexual , purely human . need someone to say , Here let me do that....I need rescuing....Why do I fall in to these manic episodes? I don't know if it's psychological or physical...The last 6 months, since B has been fitted with the feeding tube....my own health and emotional strength has slowly declined......I keep telling myself to BE STRONG...BE STRONG Be STRONG....for what , whom? B could n't care less if I died right now and ,...He'd just expect me to put in a new cd for his entertainment...

    I know he cannot help it but if my roof were high enough I m not sure i wouldnt jump off...No I don't believe in suicide....But SAT I don't want to lose

    B to this anymore make it go away

    BE STRONG...shit

    AVB

  • Its really hard. Love and hugs, Jean x

  • Yrs ago i was quite young I read I. the readers digest an article on death and how people don't like to be touchy feely when the person who has lost some need a touch or a hug. It's what they are missing .

  • We have all made like minded new friends by joining this site . Friends we can ask and talk about anything to . Right there at the tip of our fingers .

    BEv it's been tipping down all day and very dark , maybe it will improve tomorrow.

    I am lucky to have my daughter living close who takes me out for a few hours , I try not to lean on her too much .

    The one close friend who moved away is burying her husband today . She was such a good and kind friend I so wish I could be there to support her now .

  • I'm sure your friend knows you are thinking of her.

    X

  • . Satt2015. I am sorry I have lost my place where you asked about CHC assessments . Yes I just checked on line . We will have. Three month assessment the yearly after that .

    I daresay some people might be so ill it's what is needed but the recover. Of course that won't happen in our case . Although John is having a better period this last month . That's the unpredictability of Parkinsons though .

  • Ok

    I've got you thank you x

You may also like...