Hi everyone,
Today I can't stop crying, it's been a horrible few days and I'm worn out physically as well as emotionally. Keith is getting harder to look after by the day, I had to put him in the shower at 12.30 am today as he was covered in you know what! It's such hard work, I'm not sure I have the strength to do this much longer and my daughter isn't helping, she's being an absolute nightmare!
Sorry for ranting and moaning, I need a hug!
Thinking of you all....Pat xx
Sending hugs as best I can, Pat. I'm so sorry you are in such a bad place right now. This can all be such a nightmare anyway; it's awful that your own child is making it worse for you. That emergency shower...we were there this week, too. First he dove out of his wheelchair headfirst into the cat's litter box, yuck yuck yuck, so I had to wrestle him upstairs to the bathroom, litter flying everywhere, and then as I stripped him he let go with the poop I had rather been hoping for, although with better timing. The things we have learned to cope with! I'd never have thought I could. And it's such a lonely job, with our sweethearts right there. I wish I could do more than long distance sympathy, Pat, but I am thinking of you. Hang on. Love and hugs, ec
Thank you ec, I don't know what I'd do without this site and the friends I have made, I've never experienced anything as horrible as PSP, you're right it's a very lonely job! Thanks again for thinking of me, it does help....xx
I'm sorry, I know it wasn't funny for you, or your litter eating sweetheart, but it did make me smile.
😆
X
I meant it to! It WAS funny....in retrospect!
I smiled at your misfortune and was paid back. I've just spent 45 minutes making use of my spoons and 6 rubber gloves!!!!!!!!
X
The ancient cat just wandered into the kitchen, her little head festooned with something that turned out to be a litter-coated cob web. I showed my guy and told him she must have admired his look from the other night and tried to imitate him! We both laughed, as you can imagine, as I undecorated the furry friend.
Serves you right NannaB! 😅xx
"You know what" is, I find, one of the hardest things to deal with especially in the early hours. I was doing the same as you at 3am last week. When you are exhausted everything is harder. When I had babies, I would take a nap when they did. I do the same now. If I'm tired, if C dozes off, so do I. I hope you can as well.
Does your daughter live with you? What is she doing to make your life a nightmare? If she is an adult tell her how you feel. Our boys are very helpful when they can be but they all have busy lives, families and their own problems. I love them dearly but never rely on them. In the past they have made suggestions which they think will make our lives better, usually starting with, "Why don't you.....?" Occasionally they have been good suggestions but most of the time in theory yes but in reality, no. So I decided a long time ago that I am in charge. I'll do things the best way for me and worry about no one else except my hubby. No one upsets me any more. Friends who no longer contact me because they can't cope with seeing C, can stay away and I invite those who I know can cope for coffee, evening takeaways, and last week a group gardening afternoon.
Do you have much help? Not from family but from outside, Crossroads, the hospice, carers first or others. Get as much as you can. It takes some getting used to having people you don't know walking in but I couldn't do without them now. It does get frustrating searching for the potato peeler or other kitchen items but if carers/ sitters are good enough to empty my dishwasher I'm not complaining.
Please try and get some rest today. Don't put up with nonsense from your daughter, you are the boss. Don't do anything you don't want to do that's not for Keith, I know you probably don't want to do anything you have to for him. I don't want to do what I have to for C. I have never said No as many times as I have in the last 6 years to other people.
I do hope you feel better soon and am sending you a great big hug.
💐
X
Thanks NannaB, your words are always helpful. My daughter is being really nasty with me, she says I couldn't give a s--- about baby Callum, all because I refused to have him overnight. I love the little man to bits but I know I couldn't cope with a baby overnight, I can't cope as things are now!
We do have carers morning and evening and they are really lovely with Keith and me, I also have sits more or less when I want them and am trying desperately to get 2 weeks respite, I'm worn out with it all!
Hopefully things will be better tomorrow 😘 xx
If it makes you feel better, I too have said no to sitting at times and mine are past the baby stage. Ask your daughter to come and stay over night at yours with her baby so you can go away for the night and see how she reacts.
I hope you get the respite you need.
X
Oh yes I remember about your daughter's obvious ignorance to your husbands illness and even greater, her unreasonable anger toward your inability to help her. Well darlin' Like Nannab said don't expect anything from anyone and don't let others emotions get in the way of your needs. And you need to take care of yourself and your husband.
I also have to beg to differ about you not caring about young baby Callum. I looked up your old messages ...I could not rememeber what your daughter had said/done.....and all I saw was your doting on that baby and all your other grand kids. You are a WONDERFUL grandma !
Why are our kids (especially daughters) so difficult! I have not gone out with my daughter since her dad was diagnosed....except to take me to the hospital last month. I invited her today to do a quick bout of shopping and I would buy lunch, "no thanks" So here I sit alone with you guys....I'm ok I don't have time for feeling bad.....I know she loves me and I promise not to piss her off so it's best we stay away from each other,....
Now about you.....Have you considered a nursing home for Keith? you may have to for the health and welfare of the both of you. Maybe he could come home weekends or something of that nature. Remember such a consideration doesn't mean you are pawning him off on others, it means your a re doing the best for him.....
I am sending you great hugs and thank you for being such an awesome grandma !
AVB
Wise words, as usual NannaB! I use to get "isn't it about time you got....." from S's son. Like a wheelchair, long before he even needed a stick, a new house, instead of getting a ramp built, or because the garden is to big for me to cope with. Never," shall I come and cut the grass for you!!!"
Pat, there are two words that need to come into your vocabulary. YES and NO. I can think of several others, but they aren't printable! YES, I need help, NO I don't need unhelpful people around!!!
Lots of love
Heady
Thanks Heady, several unprintable words came out of my mouth last night and I'm sure you know what they were!
I know what you're saying about not having people who don't help around but she's my daughter and if she can't support me at a time like this I know she never will! It's heartbreaking really, she's always been a bit of a nightmare but this takes the cake! All I keep thinking is that she must really hate me and it's very distressing! My two sons are really great and are on the verge of falling out with her but I really don't want that, I want her to put her arms around me and say everything will be alright mum, but that's not going to happen sadly!
I guess I'm just feeling sorry for myself today, trouble is it's happening more often than not recently 😔
Thanks for your hug!
Lots of love....Pat xx
Argh..the lost potato peeler, and knives and spoons, and casseroles (how do you hide a casserole?) and the chipped bowls and cups! But, yes, it's part of the price, and mostly glad to pay it!
Did you find the casserole ?
X
Eventually! I try to think of it as a fun challenge, rather than as an aggravation, just as I learned to do when my mother in law used to fix my obviously stupid kitchen arrangements when she visited...long ago now.
Ha ha! Our chef son does that when he visits. He has two restaurent kitchens so obviously knows how my kitchen should be better than me doesn't he. He can't get here that often so I go along with it....until he has gone home. Last time he came he said, " Mum, why do you want these old scales on the working surface all the time, they can go can't they". They are my reproduction antique scales that not only look good but I use almost daily, don't laugh, to weigh my breakfast cereal. I realised I was eating double the amount a serving should be. So I said a loud, " No they can't go," and told him why. He said he thought they had come from his grandad's home when he'd died and was going to suggest I got a modern electronic set. What!!!!!!
X
.If you are like me, yet another gadget you wouldn't be able to use!!! I have still got the one somebody gave me for a wedding present 43 years ago. Marriage didn't last, but the scales still going strong!
Lots of love
Heady
Sending you a great , great, big hug. I rang the doctor last week and said I couldn't do this anymore. It stirred things up a bit! You are doing a brilliant job out of love not gain. I hope you are being kind to yourself when you get the chance, you deserve it! X
Thank you Robbo1, the thought has gone through my mind often to ring my doctor and yes I do try to do things for myself during my sits, I had my nails done yesterday but they were covered in poo last night so what a waste of time!....xx
I go through boxes of rubber gloves but have also bought 100 plastic desert spoons. They are my super duper pooper scoopers. Saves the nails and makes me smile when I see the carers faces watching me scoop.
X
You've just made me smile! I usually use them but had forgotten to order some more Nanna, you can bet I won't forget again though!....xx
Oh Pat, scream and kick, rant and rave as much as you need. You know we can all hear you and understand the frustration, anger and hatred that is pouring out of every pore!!!
On practical matters, do you have a shower commode? A chair that fits in the shower, That would cut down some of the pressure on your back and keeps him safe, while hosing him down. Talk to the O T, to see if there are things that you haven't got in place, that now are needed. Does he need pads? At least that will keeps matters in one place!
As for your daughter, S use to have a saying " things without remedy, should be without regard" I have the same dilemma with S's son, I know it's different, him being a step child, but I have had to come to terms with him not being around to give help and support with his father. Some how, (God knows how!) you have to do the same.
As for crying, don't worry about it. It would be a very sad place you found your self in, if you COULDNT cry! We need this release, it's a safety net to catch us, when our worlds are going crazy.
The hug? Well that goes without saying, we have all giving you the biggest group hug ever recorded!!!
Lots of love
Heady
Hugs to you Pat
Caring demands more than is humanly possible at times. A year ago I was trying to do it all... until Liz reported my desperate state to the day centre who spoke to my G.P.... We then got some practical help.
I do hope you can get more practical support.
Warmly
Kevin
Liz reported it? Good for her! sometimes the hardest part is feeling that my guy doesn't really see what's going on...but I know he does. He just can't express it. But then he will take and kiss my hand, and I'm all melty.
That's lovely...
Liz has difficulty with empathy at times now... I explain how I am feeling and why and sometimes she looks at me and says that she doesn't understand. (It's usually around silly stuff she does which presses my buttons after the umpteenth time). But then surprises me with loads of warmth and understanding... PS B*** P!
Thanks Kevin and it's very true, caring does feel like an impossibility at times, I guess I'm having one of those days today! I'll be better tomorrow (I hope!)
Lots of love....Pat xx
I do hope so... A couple of days ago I came out of a three day long "tearful and can't do this anymore" type spell... Today we love each other and she isn't pressing my buttons and I am not tired.
Lot's of love to you too Pat
XX
What a fantastic bunch of people ! A big hug to you all . I am so thankful for you as this would be such a lonely place without you.X
😘
Pat I wished I was there to give you a big hug, children can be a nightmare, something you could do with out, pat have a good cry, it is hard, you need some rest bite to have a bit of me time , just to be yourself for a while, something we all need, pat hopefully your daughter will realise what you are doing every day, and change in a good way, sending you a big hug Yvonne xxxxxx
Thanks Yvonne, I have had to admit to myself that if she can't change now she never will, it makes me very sad....
Big hug to you as well....xxxxx
Pat you just have to look after yourself, too much going on to worry about it. You can only do so much, your health is a priority now, you are a hard working career. Sending you a big hug xxxxx
Agree with all that's been said. I didn't use to swear but I do now. I shout and scream more than I ever have. Cleaning him up during the night is the pits.
But I have come to realise how exhausting the emotional effects are. We are all depressed because its a depressing situation. If we weren't we would be mad ! It isn't clinical depression its grieving for the loss of our dear one. We need to mourn. And they are still with us, needing care.
There are some people who are just not able to support us in this situation and we can't do anything about it. Its tragic that this is your daughter but she has to work it out for herself.
Love and hugs, Pat. hope you have a better day, Jean x
She's told me tonight that she hates me and I will never see any of them again after tonight, bearing in mind that I have her two older children overnight tonight so she can go out! xx
She is obviously in a bad place herself but you can't let her draw you in. You need all your resources. Could she get some counselling ?
Remember good mothers set boundaries !!
love, Jean x
Thank you Jean, I am worried that she needs some help I.e. counselling but knowing her she will just start shouting and hurling abuse, she is on her own with three children, that in itself says something, I do worry about her state of mind but I have to put Keith first now, there's nothing else I can do....xx
I know how difficult it is to feel estranged from your daughter. I have suffered it too. At present you need to care for yourself and Keith. She is the only one who can change her own life. Tell her what you can offer and what you want from her and then its up to her. xx
Pat call her bluff and tell her that is ok with you, she will soon sort herself out. Xxxx
I'm going to do that Yvonne, I've had enough of her selfishness....xx
Well that will last until the next baby sitting is needed. Don't forget that little word, NO. Or if you want to be completely cruel. Tell her your husband is dying of a very rare disease and you are slightly tied up looking after him at present! Then put the phone down quick. That's the line I have ready to throw at my darling step son, next time he upsets me!!! Me a bitch???? Never!
Lots of love
Heady
Heady I think I'm starting to turn into a real bitch, I have far more important things to worry about than a crazy, utterly selfish daughter! I wish it wasn't so but I'm starting to realise just who really cares and it's sadly not her! xx
Heady....I've used that line on my step-son and his even-worse wife. They called with all the condescension they could muster to tell me they would NOT be joining us for Easter dinner this year because they decided with the Corona virus it would be to dangerous for "Dad". I replied simply, "I never invited you." Then I told then a variation on your line and hung up.
Oh Pat, I just wish I lived close by so I could come round and give you a big hug and help you. As for your daughter, would you have the time to keep a diary on everything you do for Keith and and everything else you do for 1 week or more if you feel up to it. Then show it to her and point out you would love to have Callum overnight but as she can see from your diary what you are doing is both mentally and physically exhausting. Hopefully she would come round then. Stay strong my friend and hopefully tomorrow is a better day. Lots of love, Nanny857 xx 💐💐💐💐🍷🍷
Thank you! 😘😘😘
Pat Heady is right you have to be cruel to be kind. Her dad is dying she should be there for you, and come and sit with her dad to get you a break. Sometimes our children think we are a free drop of for our grandchildren, got to say, my girls are quite good, but the middle one can be a bit of a pain sometimes, but I have learnt to say no, dad needs me and he has to be my main priority, it is not a lie it is true, I am sure they realise that, but sometimes choice to ignore it to suit themselves. Keep strong pat Yvonne xxx.
Thank you Yvonne, I am so confused with how she is acting and all I can do is cuddle my lovely grandchildren who are with me tonight, they mean everything to me and I think they know that....xx
Oh Patricia deat, sorry for being amused about your treat to yourself but That just happened to me as well. I am so done with urine and feces. Just found out I have a kidney infected that started as a uti and just kept going. Feel sick and hurt, and tired and I just want to go to bed and have someone take care of me for a change. His daughter wants to come stay with us and I can't deal with it. Last time she visited she melted down about no one helping with her babyso she could go out with friends. She is extremely lazy, smokes, walks around practically naked, and does absolutely nothing to contribute to the household except make condescending remarkes about how I am taking care of her father. And did I mention she snoops and steals whatever she can get her hands on that will fit into her purse or suitcase.?We have a tiny home now and she takes up a lot of space. I am at my wits end at the thought of having to deal with her in the midst of my poor health and his recent deterioration. I have no reserves. Afraid the first smart a-- comment out of her mouth I will put my martial arts background to good use and take her down.
Oh Pat, I am crying with you. It is soooo hard anyway and any little extra thing to worry about is enough to tip you over the edge, and your daughter's hostility is not just a little thing.
I am not defending her but I wonder if, in her own way, she too is not coping with her father's illness. I expect, if she is trying to manage with three children on her own, she is feeling frightened. She has probably always relied on having mum and dad being there for her as a constant and now she can see that you can't be there for her and her father certainly can't be there for her and she is probably scared. She shouldn't react in the way she does of course, but is there just a chance that you could give her a hug and get her to express her fears to you? Perhaps it has gone past that now though and, if so, it may be better to distance yourself and concentrate on your supportive sons and friends.
Do speak to your GP about how you are feeling and do try to do everything you can to make things easier for yourself. If that means using pads and waiting for the carers to change them, then so be it; if Keith has to sit in his chair for an hour while you enjoy your garden or coffee with a friend in the other room you will not be a bad carer. Sometimes we need to give ourselves permission to take short cuts or do something just for us. (I have to admit that I am bad at this as I am hard on myself and hate to feel I am doing a bad job - doomed to fail then!). Also don't feel guilty for feeling sad and depressed, it IS sad and depressing but perhaps tomorrow will be better.
Vicki x 🌷🌄💕
Hi Vicki, you are so right! But I am not sure we should HAVE to give our selves permission, it ought to be a matter of course, that sometimes, we come first. Or things don't get done, because we are too tired to cope! It's not in our loved ones interest. I'll bet half the people who go into nursing homes, their "Carers" thought like us, we have to do everything, nobody looks after him better than me!!! Therefore couldnt last the course. I don't want to be that person, that crashes, therefore S has to go into a home, sooner than he needed to.
I know there will come a time, that S's needs will require specialised care that I can't give, but until that day, it's up to ME, to make sure I stay as well rested as possible. (No I haven't been drinking! Perhaps I should, after coming out with that rubbish). Girl has to live in hope!!!
Lots of love
Heady
Oh Pat, falling out with your children is the last thing you want at a time like this when all you want is love and understanding. I fully understand what a lonely journey this is and you can get hurt along the way by people you thiought would be with you along the way. Try to stay strong and get all the help you can, my heart goes out to you Pat. Hugs and a comforting arm around your shoulder.
Love Kate xx
Hi Pat, I understand how you feel, at times I our adult children think we are superwoman. I have a saying "You are only as good as your last act" if you babysit 1000 times and then say you cant do it they forget how good you were. Looking at all the replies you have received I can see apart from our partner with PSP we have to put up with selfish children. You take care of yourself, and all of us must learn to say No. xx
Hugs hugs hugs and more hugs! And here I was feeling sorry for myself because I have been so sick thinking I bet if I had a daughter she would come and take care of me and help me get through this. I have been falling apart physically. I know it's the stress and my immune system must be shot but that doesn't make it any easier does it? You deserve better and I hope your daughter comes around. Go easy on yourself. And please, rant and rave to your heart's desire!
Take care, Jayne
I'm sending a long distance hug. I'm not quite where you are yet, but we're getting close. Do you have hospice?
When my hubs started falling in the shower ( a few times) it was apparent that I couldn't manage showering him. Visualize greased pig. I decided to pay for a caregiver to just come in and shower him 5 days a week. I negotiated a rock bottom minimum since the process only takes 30 minutes or so. Otherwise I can still "manage" him. I am unsure as to how much longer I will be at this stage. I understand the I can't take this anymore. Luckily I have adult children who have come to live as backup support. I call for them when he has fallen out of bed at 3 am when he has decided to find our toilet..thank God for big strong men! This 5 ft nothing woman hasn't enough leverage to dead lift him off the floor...still exhausted tho. I am lucky and blessed having them.. I am sending that to you and hugs!
As much infomation as possible. 
My David struggles no more
Can't control his face muscle's
