Had a really bad day, haven't slept well for two nights, Keith has fallen again today, says he doesn't like going to the hospice and doesn't want to go again, am feeling really low and don't know what to do, just keep crying all the time and feel my patience has hit rock bottom.....Pat xx
Not coping today 😓: Had a really bad day... - PSP Association
Not coping today 😓
Written by
Patriciapmr
To view profiles and participate in discussions please or .
44 Replies
•
Hi Patricia sorry you have had a really bad day, what about a day centre, George was going once a week then we increased it to two he really likes it, it is from 9.15 until 3.15, he might enjoy that, also you could get in touch with crossroads and get a sitter once a week, to sit with Keith for a few hours and week?
My patience is also rock bottom, just feel really bad the last month, can't shake myself out of it. He does not want to get out of bed at the weekends, Saturday he would not get up until 4.30 and Sunday it was 3.25, fed up with talking to the dog, he went in his basket and went to sleep, I must be so boring.
Never mind it is Monday tommorow so a few hours for me. Hope things work out for you. Yvonne xxxxxx
Hi Yvonne,
Good to hear from you, you have made me feel a little better just knowing that someone understands me, it can be a lonely journey at times as most people don't really understand this illness, but the lovely people on this site do! I suppose I'm feeling sorry for myself and really fed up with the situation I find myself in.
Tomorrow is another day and we do actually have a first visit from a sitter from another hospice, he is going to stay at home with Keith for three hours and if the weather is fit will take him out for a walk. I'm going out for lunch with my mum and my sister so I will probably feel a bit more positive then!
Keith has been so slow today, he keeps freezing and it takes me ages to get him moving, when you're tired yourself it's so frustrating, I keep having to tell myself what he must be going through and then I feel ashamed for being so selfish. It's so hard sometimes as I'm sure you know too well and so unfair!
Feel better for talking to you though!
Love to you and George....Pat xx
Pat it will do you good to go out with your mum and sister for lunch, don't feel bad we all go through this, yes I feel bad if I have got upset with George, put we are only human, just take one day at a time, that is all we can do, and not sure we're you live, see if there are centres around were you live maybe Keith would enjoy them better, love and take care have a lovely carefree afternoon, my day off today sending you a big hug Yvonne xxxxxxxx
Hi Pat, I hope today is better. I've had a horrible start to the day so totally understand how you feel. When Colin could speak a little and we were trying to get out, I kept saying, " Come on, quick" as he was so slow. One day he said, very slowly, "I don't do quick". We both laughed then and now, whenever I become frustrated at his slow movements, I say, "I know, you don't do quick" and he laughs. I've had to try not to think about how things were. Everything is different and we are never going back to how things were. It is hard, frustrating, sad, unfair etc etc, but it is how it is and I've got to adapt to it. I give us an hour to get out of the door and in the car if we are going out; 90 minutes from bedtime drink to tucked up in bed, an hour for breakfast, tablets teeth. It's a bonus if we get done within the time but I get less cross, upset, frustrated etc than trying to hurry something that can't be hurried.
Summer is coming, less clothes to put on when we go out. I may soon be able to reduce the time.
Enjoy your break today. Colin didn't want sitters but I had to be very blunt with him and tell him that if he wanted me to look after him at home, he had to let me out sometimes. I told him I don't want others looking after him full time, but I'm not a saint or an angel and if I end up a wreck, I'd need looking after as well.
Try not to spend the whole of lunchtime talking about PSP, you need to laugh so I hope your mum and sister can cheer you up.
Love Nanna B
Pat Nana is on the money....there are no open doors in this illness ,they all lead into more problems,nobody has a steel character so don,t expect too much of yourself.we are humans not saints yet when I look back it takes sainthood to be able to do this job,don,t let yourself get sick..love Rollie
hi Nanna . well we had our visit from the social worker, she came along with a woman from the contracts felt . they oversee care companies . she did ring me a while ago unexpectedly and I didn't have a clue who she was .
wish I had know at the time . When our case came up in the office this week she remembered so visited the same time .
A good visit and interview . looking at getting longer care in morning and. Another du roping the with the night as well . We already have that .
I asked about a carers sitter I tr,y and get out three lunchtimes each week for a few hours about two . It recharges my battery .
they told m they don't do site just specific things such as washing and toileting maybe feed . so watch this space . I might try and get a carers call midday so that can't help instead of a sitter . At least he would have someone with him while I am away .
they are t.alking about changing the care company they were shocked when told we had already had 113 different carers . . It is much better now .
Lathe subject came up about CHC . If I could get that the card package would be easier to get they told me . o am not get.ung excited about it . They will ask d nurse GP etc so I need them on my side . my trouble had been I have been doing the work of GO Nurse and carer wife . Shot misled in the foot .
soda law it was one of John s better days .mi told her to contact the Parkinsons nurse she will tell her how in consistent it can be . JOHN certainly is . He switched off once she had gone and is still switched off ..
I have played on John swallow and choking although to be honest that isn't as bad as it was .i keep his mouth scrupulous sore bottom the same I am vigilant . But he still has sires . I also keep him dry . left to the carers that wouldn't happen .Can u give me any tips . will they all come and see us at the same time to ask questions . I know they have to tick a lot of question
lots of his meals go in the bin because he has switched off by the time I go into the kitchen and back . his head gets so low it's very difficult to feed .. o use to fight it but have learned that's it's no good trying at those time
Can't believe it! I've just sent you a long reply and it disappeared. Short version this time. I downloaded from gov.uk the Decision Support Tool for NHS Continuing Healthcare. If you Google it, it will come up. Part 2 of the form is the one they will complete. If you read it, you will be able to prepare the answers as it is difficult to remember everything that happens at home if questions are being asked for the first time. Initially one person came to see if Colin would be eligible for the next stage. He was so then 3 came, one was a nurse from the Hospice. Tell them how things are on the worst day. If you say you leave him for short periods it may not count as continuing care. They don't take into account the worry you go through wondering if he is OK. I hope this doesn't disappear so will stop now but if you do download the form and want to know more, let me know.
All the best.
X
Thank you, I will do so . You are do right if we didn't get away from and do something a bit normal you wouldn't cope the rest of the time would u , I know I shouldn't leave him but he wants to to go
what sort of care does Volin have fo you gave sits as well or do you get some private ones
I did find it hard in the first place going without him , we always did everything together .
on top of it all for years I suffered agoraphobia and couldn't even go outside the house, it would be dreadful to go back to those days , those feeling are still not far way which is shy I push myself to go .
I know the day they come John will be ok , I feel awful wanting him to be his worse on the say .catch 22 .John hadn't been outside the door for two years even . I can't get him into the garden even . Inanimate thinking of having a patio door fitted.=and decking the front area to raise it to the sill . But to do it it he would heed a more suitable wheelchair tonne able toms it in he only has a transport one it doesn't recline or raise legs
Yes you have to get out. When I first gave up work I would leave Colin for short periods until the day I returned and found him on the floor, very hot and sweaty from trying to get up. He said he had fallen as soon as I had gone out. Continuing care has given us 5 night carers each week. Originally I could get him out of bed so they left at 7 am. Then the day came when I couldn't get him up so the carer now stays til 8 and gives him a shower, dresses etc. If our regular one is away, I help get him up but the regular one does it alone. Sunday and Monday morning we get a carer from 7- 7-30. I get up at 6.15, get myself ready and shave Colin and then we both get him out of bed, she showers and both get him dressed in the half hour. I have two sits a week from Crossroads. I don't have to pay for that but I know in some areas a contribution has to be made. Our sons are very good if I want to go out but as Colin has colitis I don't ask them to stay alone much because toileting is not easy. With my Tesco problem this week, one of our sons sat with his dad while I went shopping and I was surprised when I returned as Colin was on the commode. Darren hadn't used the hoist but had managed to get Cs trousers down one handed. He said he stood behind him with his head pushing his back so he didn't fall over. I'm pleased I got home quick enough to clean him up, I don't think either of them would have like the alternative. Talking of Tesco, I have been given a £15 voucher with no minimum spend so I will use them at least once more.
Have a good day. Sorting paperwork today while C is at the Hospice.
X
how does he get to the hospice . we have steps to the front and back . And he cannot weight bare so has to be hoist at all time . he hadn't even go to a hospital appt because he needs hoist every time .
I have come back to find flat on the floor it's upsetting isn't it . he doesn't try anymore so is safe in chair except he cannot raise and lower chair himself . ,ecause of droolin and his poor coginitive and coordination finds it b difficult to pick out a tissue and wipe his mouth . His hands are also affected .
then after a while his head goes forward and he cannot see or find anything or watch TV ,op type of all that he switched off randomly .
he does even when I am feeding him , I have to find slots to fit eating in . it's the complexity they don't see when they come to assess.
I don't think we will get CHC for one minute. But you try to keep them safe fed weathered and comfortable at all time to stop thing getting worse don't you , In that respect its more than continuous . I use Tesco . I often. Say I wish we had had some strong sons who lived close . we only have one daughter Christine and she is tiny . john isn't a tall man , which does make it easier for me except I have to bend so low all the time
We had to get the French doors taken out, the threshold lowered and a new door put in. With a ramp I can get him outside at the back and then round to the front. I couldn't do it without an electric wheelchair though as we have a steep slope at the front. I then get the chair into an adapted vehicle and take him to the hospice myself. We have 3 steps at the front so can't get him in there. Colin can weight bare but I have to use a standing hoist to move him from chair to wheelchair or bed. Colin can't get tissues out of the box but can wipe his mouth if I hand him the tissue. He can't blow his nose anymore and his head is on his chest. The TV is low down but he listens rather than watches. Did you know you can get prism glasses from the PSP association. Colin wears his in church as the screen with the words to songs is high up. He can see it with his head down wearing the glasses. If your TV is high, they may be good for your husband. I hope you do get CHC but if you are not successful the first time you can try again.
I hope your bank holiday weekend is good.
Nanna B
X
thank you for all that nanna , we have a little drop from window to Florida but I think if we decked the area it could go reuse to meet window . I would gave to get some advice on it. I don't know if John would like to go outside its been such a long time .
Colin sounds a lot like John . he did have eye test but he. Doesn't find any difference with or without them .
I have cut the fingers out of some cotton gloves , that helps keep his fingers apart a bit and flattens thee palm a s well .
what is Colin's special awareness like , it was one of the first problem s John had a why he gave up the car . if I hand him something he misses my hand to take it from me . . while I am feeling him his hand will come up to his mouth at the same time . the nurse says its habit but he had in times had hallucination especially when taking certain meds , the he tries to. Feed himself with imaginary food . he will try an chew , then he will look down thinking he has dropped it because there is no taste .
luckily he hadn't had them for a while.
Colin is constantly putting his hands to his mouth between each spoonful of food. I give him a tissue now and he wipes his lips each time although he doesn't need to. It's better than putting his fingers in a mouth full of food though. If I touch his hand he will lower it but it does make feeding a long job. Yesterday staff at the Hospice apologised as I went to collect him as they decided he should be able to feed himself. His top and trousers were a bit of a mess. When I ask C if he would like to go out, he always puts his thumb up. We don't go very far at the moment because of his colitis and need for the commode urgently. Last week he just sat in the garden for a while but he is always far more alert when he is out.
Have as good a bank holiday weekend as possible x
it's a strange thing the brain isn't it . the nurse when I told Parkinsons nurse about the hands she said it's a habit learned .
it's sort of compulsions isn't it , So frustrating . john also fiddling with his hands and fingers and as if trying to pull cotton twisted around his fingers .
Can Colin find his mouth to feed himself . they can all have brief moments when easier . they have enough on their plate to cope with the swallow . he is also smacking his lips I thought it was to control any liquid or saliva because when he. Does stop it pours ours . that's when he can start to jump jerk and sort of switch off , Sometimes briefly but often goes off for ages . it's no good fighting it then .
you do your best to have a good weekend too .
I Was up at two this morning he needed the commode couldn't ho all day so hoisted him in and out of bed after cleaning him I had to put two dressing on his botto as well yesterday .
went back to sleep and woke when Carers called me .
there runs were all over the place this morning so couldnt fit me in to call back .
they were doing split runs always the same in weekend but we still have to lay don't we .
it's another reason I need longer calls .
I looks like his gout has returned again only in his ankle this time .
one day is much the same as another now to me although I hope he is ok for me to go out for two hours tonight . off to see if he is awake for breakfast . haven't washed and changed his top yet but no rush now . . it's raining here can't complain haven't had any for a long time .
Colin can find his mouth but everything falls off the spoon before he gets it there.
Kate has had a baby girl then.. Good news for a change.
Colin has just woken up after his second change of clothing today so off to make some coffee.
X
john used to be able to feed himself with difficulty depended on the time and how he was.
I haven't even washedJohns top half yet and changed him , But he has had his breakfast after to goes , I started th. realised he denture seal had broken so had to stop and sort all that out . I did lose it at the time ! telling him off do not letting m know thy were so loose. At am not always aware. then I apologise.
we did hav another go when it was sorted .
we at all behind now today . I will wapiti until he is more alert re prove and wash him then I I'll just put a fresh pyjama top on . I busy the log sleeve soft cotton tea shirts now and he doesn't wear bottoms at night but has a lad . it makes everythin hog so much easier do both of us. Ali put long cosy feet socks on him it stops his feet rubbing on sheet as well .
that is good news I was hoping for a girl and Charles was Apparently . . I have put a chicken in the oven or rather a breast . Do the veg ready , maybe I will go and have a way myself lol at forget about myself . air maybe I not lol
Patricia . as you can see we have all BEEN through what is now happening too . The illness doesn't come with a set of instructions does it , on top of that everyone is so different , but still the same
don't hold your breath Nanna with improve with the times . Lol of course u know that already !
my daughter is very good in veering me away from any conversation about John while we are our . john didn't want sitters either but like you Nanna I had to be blunt , not easy or nice to have to do . he is getting used to it we have crossroads m a nice young man comes dies some of his course work at the same time .
I am having a meeting with social services on Thirsday though to try and get the carer /sitters from the care Co, I think we will get it , I don't really want them in ypthe house myself either . You try hard to keep life as normal as possible , can't remember what normal is now though lol .
hoping to go out for an hour this morning , I haven't got a sitter . I worry about leaving him but forget once out . once u come up the steps of the house I get worried of how I will find him . I haven't had the camera set up get Nanna . Still in the drawing board !
I hope you managed to get out and everything was OK when you got back. I remember that feeling of wondering what I would find. Such a relief when all was OK.
It was a shock this morning when I woke to the sound of the bed sides rattling. I grabbed the monitor, I can't see a thing without my glasses, put it up to my nose and got the shock of my life when all I could see were two swinging legs over the rail. I don't remember running downstairs, one minute I was asleep, the next downstairs. Life is never boring is it?
r u both alright . That happened to me . he can't move , then he can it was before we had the hoists etc his legs got stck between the bars . ended up with me having to support him I managed to get the rail don and and place a chair under pat of him to help me . we the had to wait until the carers came .
that's when I started to put the pillows down the sides of him and lagging pipe around the fails lol . What we do for love !!!!
that's all before the day starts proper isn't it . I remember my had a very bad Stroke, she was still in hospital and could respond by then . as we were leaving we were saying goodbye I turned my back and she kicked her legs over the siDe of the bed . she knew she was staying but it was like an utimtic reaction as if she was leaving with is . . twice I had night time phone calls from the home she was in eventually telling me she was in hospital . had rattled the bed sides until they broke and threw herself out of bed .
when we got to the hospital she was sat up smiling at me while they stitched the biggest bump you could imagine
Lagging pipes around the rails
We are ok thanks. I don't even attempt to get him up now as my back is so weak. The carer wasn't due until 7 am so I couldn't leave him there for 2 hours. The ambulance staff use our elk. Colin would remove lagging, although it sounds a good idea. He managed to almost remove the bumper once and that has tough Velcro the whole length of it. I think we will eventually end up with a ceiling hoist.
X
yes he probably would then it's quite fragile I strap it round but Johns ok with it .
john doesn't try and get out of his chair now or the bed .Thankfully .
once I couldn't get John up ,and I couldn't keep asking neighbours to help is when we got the hoist installed . it's the best thing since sliced bread . I wouodnt manage without .
they did try the one you push around but I found it to heavy . we have Ceiling hoists one over bed the other over his chair which is the lounge . I hoist him into the wheelie commode . the hoist isn't attached to ceiling or walls So no damage to house . the ones we use do have long feet though and I did have to get rid of some furniture to accommodate it all . they have to have two carers to use it but I manage it on my own ,
Be firm about the hospice - you have to have a life too . My wife changes her mind about going every other week but I have hardened my heart and said you are going as this is the only time for me to do things which I need to do - and don't feel guilty just remind yourself of all the things you do for your husband all the rest of the week . You just have to have a bit of time out for yourself and he will just have to put up with it . Sounds hard but its survival .Georgepa
Sorry to hear that you are having a bad day. Just wanted to remind you that if you would like to talk about how you are feeling you can always call the PSPA helpline on 0300 0110 122 Monday to Friday 9.00am - 5.00pm and 7.00pm - 9.00pm.
Heady• in reply to
Wow, what a lovely post. Didn't know anybody else, apart from us carers and sufferers came on this site. Nice to know someone else cares. Is anybody else is out there, listening to our plight???
Heady
Hi Pat, Gosh, you sound so tired! Like everyone else is saying, you MUST get out, you MUST get some rest. Most of all, you MUST get Keith to go to the Hospice! You could see if there are any other Hospices close by, that would accept him, might be he doesn't like this particular one. (I am going to sound really cruel here, hey ho,) if he won't go to the Hospice, try one of the day centres, run by social services for the elderly!!! Then give him the choice! Bet he chooses the hospice!
You have to explain to Keith, you are both in this together, Keith might be suffering the symptoms of PSP, but you are having to put up with them and trying to find ways around them. Therefore, YOU need a break. Again, this will come down to his choice, either you look after him at home, with help. Or he waits until you have totally collapsed and he will have to go into a home. (Sorry, I really am on one today!)
Like you, I am exhausted. The travelling has really hit me this morning, doesn't help, that my house is filthy, one suitcase still to unpack, others unpacked, but stuff littered all over the place and a bathroom to clean and cupboards to be filled! I could go on, but it's depressing just writing it all down, knowing the list is a lot bigger!!! The only light at the end of the tunnel, is this weekend, I have my final birthday present from my children. They are taking me and S away for the weekend to North Devon, in a cottage, so it will be party time again!!! (Oh to be an adult again and do grown up things!!!)
Look after yourself Pat, Keith needs this more than anything else!
Lots of love and big hugs to you
Heady
Wow, a weekend away and with your children. Have a lovely time but don't get too exhausted trying to get all the other things done first.
X
Nanna, you know me well!!! Of course, I will make sure everything is done, just because I come on here and say some sensible things, doesn't mean I actually practice them!!!!
Lots of love
Heady
hi heady
i can be the same = - say one thing and do another!
lol jill
and enjoy the weekend away with your lovely S an d ur children!
hug san dxxxx to u all
Dear Pat. It’s over five years since my wife died but your post brought back the memory of the point at which I realised I simply wouldn’t cope without a nights sleep. Searching for this one relatively modest bit of help unleashed a torrent of assessments, funding and assistance, much of it I felt was intrusive and unnecessary, but I was wrong. It didn’t all happen at once but scaled up as the increased needs became apparent; between the local Hospice and Social Services they steered my wife and I through a very difficult time.
You will need help from professionals who know what is available and how to source it; in my case it wasn’t the local GP service but a Hospice and the Council, in other locations this may not be the case but it is essential for both your own health and that of the person you care for to get help. I was a fit man, although admittedly not in the first flush of youth, when the need for care arose. I could comfortably lift my wife but had the roles been reversed it would not have been the case, even so we had a hoist for both our comforts.
Crossroads would be a good place to start to provide cover whilst you get the sleep you need – sleep is essential not a luxury.
Very best wishes, Jerry.
Oh dear Pat. We don't know each other - I'm also a PSP wife, living in Sweden. I am so sorry to read how you feel. I recognize the pain. I wish I could offer you a shoulder and some hours without worrying. Don't you have anybody who can help you?
I know that it's difficult to ask - some times one doesn't want others to see the state of the one who's sick and some times the sick one doesn't want anybody else around.
Dear Pat - please remember that in aircrafts they tell you to first put on your own oxygen mask before you can help others. It's the same in this situation. You need to be strong to help and to be strong you need time to gather strength and to be on your own for some hours or days even though it very hard, when the hubby doesn't want to go.
Do you know why he doesn't want to go? Do you know if the place isn't quite OK or could it be the mere change of environment that stresses him? Might it be that the Hospice environment is depressing in itself?
Is it possible for you or both of you to talk to a counselor at the Hospice and get Forward Therapy?
Please do reach out for help. Many people want to help, they just don't know how to ask. Please contact a doctor, the church, a neighbor or a family member and ask for help. They will probably be happy to be able to help you.
Hugs to you from Sweden - you a fantastic person doing an amazing "job", don't ever forget that. 
hi there, I haven't been on the site for awhile now. its too hard to read all the comments. my husband has psp for the past 7 years. it really is getting to me .I have help through our long term care which we took out 11 years ago not knowing we would need it so quickly. she is with us for the past 3 yrs. she takes wonderful care. he is mostly in bed now since he cannot walk or talk. we do take him out everyday for a ride somewhere. we live in florida and cannot travel anymore. I cry all the time and miss our kids and grandchildren. we have 3 sons who come down when they can. they are busy with their lives also. I miss them all. I try not to burden them with all of this. I feel now that its enough suffering for my husband and me. how much more must we both suffer. why are we being punished with this horrible disease.??? there are no answers but just to go on. I am 66 years old and my husband just turned 68. we have been married for 43 yrs. now. we worked so hard all of our lives and retired to florida to enjoy??? maybe we had 2 good years before my husband started to decline. now its really bad and everyday seems like a challenge. hope this ends soon because I am running out of steam. im really at thend of my rope and so is he. maybe someone out there can help me get through these trying times. thanks for listening. bubbie is my name.
Oh I am sorry for your hard time, bubbie. There is no answer why bad things happen to good people - one of the tough questions the theologians can't answer. BUT, I have seen how hard it is when a sudden death takes someone, too, so know that at least I have the chance to be with my sweetheart through this, and there is value there. You are farther down the road than I am, and I know things are going to get worse for us, so what can I tell you that can be of comfort? Still, how wise you were to get the long-term care in time. We missed that boat, so I'm on my own that way. I don't know how people who have no health insurance at all manage. Is there no caregiver support group for you in the area? It sounds like you could use a nearer shoulder than this one, but do know you are not alone. Hang on. Love and peace, Easterncedar
I never feel sorry for myself . I am 78 John is 81 .
I can't believe I a, 78 . I don't want to be lol .
but I do get frustrated tired and frightened sometimes . the worse time for me will be when John is no longer with me .
he is bed or chair bound I use hoists continually . To move or commode him .
he doesn't want anyone but me to see to his personal bits , I have learned how to tun him . He can help me a little .
I am gradually getting the morning carers now to join me while doing so , It's Ben very difficult to let go mainly because during the last two years have nphad 112 different carers . Can u believe that . It's true.
thy are starting to get better recently .
I have waited for six. I this for social services to get back to me after requesting. A second assessment . After all it is a progressive illness
I to have a sitter for three hours from crossroads but have meetings at last with social services for more care and sits . I struggle to get out but once I do. I forget for three hours . As I walk back up the steps it starts agin but my battery is bed charges .
john doesn't want any sitters but I have told him it's like blackmail and ai must not give in to him in to him Ben though it np breaks my heart . none of us want strangers in the home but what's the option . we have only one daughter who was a tower of strength to me when my mother was ill for three years she baca stroke I don't want her to go through the same thing agai. It broke her marriage or went a way to help it .
I have not had a holiday for over ten years not a day off . doesn't matter though you hot to come back anyhow .
I would be completely lost though if I didn't have access to this site. I never feel alone now
sorry the script is so poor . I am cooking dinner at the same time.
Its so cruel the things people have to endure. I am not in such a bad situation yet but I know it is coming. The only way I find of coping is to make the most of NOW as it will be worse and Chris still has a quality of life. I dread how I will manage when I feel his quality of life is too poor. Perhaps my definition of quality will change.
I do resent how I'm losing my life in order to support him. He is loving and appreciative and worries at my loss of independence. We have many lovely memories but its an awful situation that we are all in. Thanks for this site to acknowledge that.
I hope you have managed some sleep and feel better, Pat. I become a real grump when sleep is broken.
Hope you get more support but I also agree you just insist on your needs being met.
Love and hugs, Jean
Why do we have to fight so much for the help we deserve, I don't blame you for being so down and upset when what you need is for someone to be there when you need them. This can't always be close family or friends so professionals need to take the lead to assist. We aren't all strong and confident in asking for help. Why oh why doesn't somebody look out for carers after all we save the tax payers millions of pounds a year by caring for our loved ones. I hope that Keith accepts that you need a regular break to be yourself, I fear this will be me in a few months time. Feeling very tearful myself as just returned from my son's in Bristol, they announced we are to be grandparents to our second grandchild in December and I know I can't be the Granny that I would love to be. Stay strong. Xx
hi
of course u will eb a wonderful granny to your grandchildren! just be thankful tha they r reproducing for you (AND UR HUSBAND)as well as themselves
i never rhad childr en and therefore no grandchildren but now hav ePSP and would not have wanted my children to see me go downhill as i have done in the last12 months- nbut 4_ +yrs since dxd so not bad going for me - much worse 4 others when it si a quick decline i know
Not tha tmy partner really agrees there
lol JIll
[PS KATIEBOW
I HAVE SME TYOU A MESSAGE ON THE MESSAGING P;ART FO THE SIT E
LOLJILL]
Not what you're looking for?
You may also like...
Not coping today
My wife's OCD behaviour has taken on a new twist . If I am making a coffee or tea and I ask her if...
Not again
Do you think someone out there doesn't like me, George been agitated all the afternoon, doctor just...
Coping with Groaning.
My mother has just been diagnosed with PSP. She groans, usually when tired, with each exhalation...
Not good today!
My darling hubby has slipped off the plateau he has been on for months and has changed so much in...
Help on coping strategy
Help, any ideas or tips ? Husband has frontempural dementia as well as PSP. Hoist has to be used,...
Tough time coping with cognition
Today 
psp and coping
feeling happy today
