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Having a grumpy day!

(25 Posts)
Luckygirl Thu 31-Jan-19 14:27:15

Mostly I tick along here with all the limitations caused by OH's PD. But not today. I have a bit of a cold and I guess that just tips my patience over the limit.

I suppose it is just this feeling that I am stuck. So hard to go anywhere. We were to go to the hospice today for an appointment - but OH has asked me to cancel it, exactly as he did with the previous one. I was quite looking forward to change of scenery - the high point of my week! He hates washing but insisted he have a shower - I said it would tire him out so he would not have the strength to go to his appointment, but he insisted - and - guess what! - he is too exhausted to go. Sigh.

PD nurse has made a minor change in his drugs and it has caused chaos - endless challenging me about what I am giving him, as if I am trying to poison him!

TV on all the time - I have heard these programmes so many times that my heart sinks when they start up.

Grumble, grumble, grumble............sad.

But I guess things could be a whole lot worse.

Wheniwasyourage Thu 31-Jan-19 14:35:16

Oh dear, Luckygirl. I'm not surprised you're feeling grumpy. Hope it helps to let it out here. All I can do is send you flowers [a hug - hey, HQ, we need a hug emoticon!!] and sit you down for a nice brew or even a wine .

Hope you feel better soon!

Ilovecheese Thu 31-Jan-19 14:35:36

Sounds like you are perfectly entitled to have a grumpy day. You are doing an impossible job with not enough support, and with good humour and courage. Be as grumpy as you like.

GrannyGravy13 Thu 31-Jan-19 14:39:56

Luckygirl you have a lot to contend with, I hope having a good old moan here has helped.

tessagee Thu 31-Jan-19 14:54:48

Luckygirl you're a star doing a sterling job and no one reading this will fail to sympathise with you. Look after that cold as best as you can and I hope things get better very soon. flowers

dragonfly46 Thu 31-Jan-19 15:05:07

Luckygirl knowing your situation you are entitled to feel low.
I go to a Carers group once a month and there are a number of people there whose husbands have PD. Looking after them is indeed a thankless task it is quite selfish of him to refuse to go to the hospice. He needs to know what a break it is for you. I found recently when my DH was incapacitated it helped occasionally to have a melt down. It made mine appreciate me more.
Realise you are not alone, we are here to listen, sympathise and send you virtual hugs.

Namsnanny Thu 31-Jan-19 15:10:27

Hope your feeling a little better for venting!!! As everyone else has said, well done and look after yourself if you can.

silverlining48 Thu 31-Jan-19 15:16:16

We all have grumpy days and it seems to me that Carers whose work is hard, deserve some extra grumpy days. Tomorrow will be better. smile I hope.

kittylester Thu 31-Jan-19 15:22:57

Vent away lucky!

HildaW Thu 31-Jan-19 16:38:48

Oh Luckygirl, Moan away you have every right. Do you have contact with a carer's group or similar. We managed to find a small local charity who 'baby sat' when we were carers. We explained it as a nice lady who came to visit - she stayed for about 3 hours and would just sit and chatter, make a cup of tea etc. Nothing exceptional but it was more than enough and FIL did not feel it was anything official, just a nice lady. We got to go to Sainsburys when she came....Yay! Seriously you have a tough job and I do hope you have some sort of a support system around you. Carers need caring for. Moan all you want! flowers

Anniebach Thu 31-Jan-19 17:17:20

Luckygirl you are not grumpy, you are sharing your emotions, keep sharing my love

Hugs x

M0nica Thu 31-Jan-19 17:31:50

Luckygirl, your a hero and entitled to moan. DFiL had Parkinsons and was taken to the local day care centre (in the days before hospices) 2 days a week. My MiL said she couldn't have coped without it. He would have a bath and they would cut his finger and toe nails. DFiL was resistant to going there at first, but once he got there he really enjoyed it.

I do hope you can get him there for a day so that he can see how pleasant such places are and give you a breather.

Luckygirl Thu 31-Jan-19 17:51:17

Thank you for letting me moan!

He has his care overseen by the hospice - he has had music therapy and mindfulness (because of his severe anxiety) - but the last two sessions he has not wanted to go and I have had to cancel.

He has been offered day care (No), respite care (No), bath and hair cut (No).

I feel so low just now that I think I am going to have to be more insistent about these things. He will hate me, but what else can I do? I will try and talk to him later about these things, as even he can notice that I am not at my best today.

What is he doing right now? - reading through his district nurse notes (again!) and agonising over every detail.

I know he feels rough, but I need for him to just talk about something else - anything else - some of the time.

I usually go to the St David's Festival in May as I love the place and the music. I have found a ground floor B&B and thought he could stay there while I go to the concerts - but I am beginning to feel it might be better if I tried to persuade him to agree to respite care at the hospice that week. I would know he was well looked-after and could just enjoy the concerts and the seaside and hopefully come back refreshed.

But I do not want him to feel rejected; although I know the girls will visit him.

HildaW Thu 31-Jan-19 17:59:40

Luckygirl. I do hope you can broach the subject of having a bit of time to yourself. It might be that you will just have to insist with the help of the hospice. You will reach the end of your tether if you do not get a bit of a break and I really feel for you. Take care of you - its so important. All the best.

BlueBelle Thu 31-Jan-19 18:34:46

I can’t add anything Luckygirl except I feel for you and talk away all you want if it helps xx

sodapop Thu 31-Jan-19 21:45:49

Don't feel guilty about taking a break Luckygirl you deserve it, St David's sounds ideal. Let your family help for that time and things will be fine.
You are not grumpy, just frustrated and that is so understandable, keep it coming, we are here to help.
thanksflowers good wishes to carers everywhere.

Feelingmyage55 Thu 31-Jan-19 22:38:31

You deserve a break. Is he a “numbers” man? There are 164 hours in a week. Why should he not let you have 5 hours break while he goes to a day centre? Perhaps one of the girls could step in and explain that you need a break if you are to keep going. But I sympathise as I know how thrawn unwell men can be. 🙄

Luckygirl Fri 01-Feb-19 11:20:23

Thrawn - I have just looked it up! - good word.

I am going to try and broach the subject today and see how it goes - wish me luck.

Ilovecheese Fri 01-Feb-19 11:31:26

Good luck Luckygirl
Remember your feelings are just as important as his.
You are a person too, just as much as he is.

Auntieflo Fri 01-Feb-19 12:05:15

Luckygirl I have no more sensible thoughts to add, except that you have been on my mind since yesterday, and wondered whether your DH has softened a bit in his attitude. You do need to have your own time, to continue to deal with all that he throws at you.
Will the Hospice bathe him? It would save you the problems of him then being too tired to go to the Hospice afterwards. Sometimes these problems are easy for others to solve for you, so apologies if that path has already been explored.
Keep on having a moan here and getting things off your chest. Sending {{{hugs}}} and a peaceful weekend.

Anniebach Fri 01-Feb-19 12:28:04

Good luck Luckgirl. X

MissAdventure Fri 01-Feb-19 12:32:26

I wonder if it might be better to leave telling him things until they're almost about to happen?
It might save his anxiety, and he could be on his way before he has had time to worry (and change his mind!)
Its no wonder you feel worn out. thanks

Gonegirl Fri 01-Feb-19 12:48:19

Sounds like you are living a nightmare Luckygirl. I admire you tremendously. flowers

morethan2 Fri 01-Feb-19 12:49:00

I wish I could give you a bit of sunshine to brighten your day. flowers I really admire your love and dedication

SalsaQueen Fri 01-Feb-19 22:47:37

You are doing a very difficult job, and I admire people like you. Make sure you get as much help as you can. Crossroads Care may be able to help you. They have branches all over the country, and can provide someone to look after your husband for a couple of hours or so, weekly, to enable you to go out (shopping/to a cafe/have your hair done/just have a break). You must take care of yourself in all this. Good luck x