Having a pretty crap time at minute, never felt so low and struggling to snap out of it. Usually I can or should I say I have to got no choice 😀
I seem to have turned into the adult whilst my parents are the kids. Dads that fed up he can't make any decisions no motivation, mums just not there anymore cause of this shit psp all she does is cry (I do completely understand why) I'm trying my hardest to fight Chc all I want from them is to tell me what help they need, what would make their lives a little easier all I get is "I've no idea".
Deep down I think dads at the stage where he can't do any of it anymore and he's hoping someone will suggest putting mum into nursing home, just as long as it's not him that suggests it because that way it wasn't his choice. But I also won't beable to live with myself if it's my suggestion. Specialist nurse has said mums only survived this long because she's looked after so well at home. I'm sure going into a nursing home will kill her. Just don't know what to do
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richmond1
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Awe Richmond bless you, this is sooooo hard! Listen to me, and listen good, you will get through this, because there is no other choice! It is total shit, there's no getting away from that! Either you or dad has to make a decision and fast, your dad can't go on as he is due to his age and health, you can't carry on as you are cos you'll crack! Investigate local nursing homes right away, speak to your colleagues, your a district nurse, you can do this! I appreciate you have the emotional side to deal with, but you must look into places now! I don't want you to crash! You got your family to think about too! Chase chc, don't leave it, let en know your at breaking point as is dad. If you need a chat you got my number, big hugs x
Oh Richmond, I am in that particular black hole myself. I know I need more help, I can't cope with S on my own anymore, but what would make the difference, I haven't got a clue! Just want a fairy godmother to come and make it all better or take over. Which ever, I don't care, I just need someone to do something!!! Yes, even make that dreaded desicion about putting him in a home.
Your Dad is feeling exactly the same, he is looking to you, to be the fairy godmother, not because he is shirking his responsibilities, he is in the horrible position of simply not knowing what to do to for the best. He is so, so bone tired, he is not functioning. PSP does that to Carers.
Last week, S was in respite and although I know he didn't want to be there, I am sure he felt safer, things were under control, plenty of staff around to help with the day to day caring. Also, it gave me valuable time to do my most important job, being a loving wife.
Does any of that help in making that desicion, of course it doesn't!!! I know the day is looming, when it will have to be taken, for S's sake and safety, but I still don't want to make it.
Even though, I did make the same call for my mother, the actual day I took that desicion, it was the easiest one I have ever made and the best one, to boot! My Mum has never been happier in all of her 86 years. (She has Alzheimer's). So perhaps we both need to stop worrying, when the dreaded day comes, the desicion will be made for us, there won't be an alternative. All we can hope is that our loved ones are not harmed by the wait and we survive.
Its really hard being in your position. Everyone seems to want you to take the responsibility.
We're not at your stage and I haven't had to take these decisions.
Could you bear to be the adult ? I don't know how old you are but I do remember realising that I needed to be the adult with my parents. It was hard but I did have sisters and we co-operated well together. My father couldn't bear to make any decisions mum wasn't happy with.
Its dreadful but we were rescued because she died, otherwise it was going to be a real test. There is a time when it can't continue at home. Its always hard.
Thanks Jean I'd like to put I'm in my 20's lol but I'm really 50 😀
Mum and dad have both depended on me for a while now mainly because I'm a nurse and they think I have all the answers, but as we all know it's not that easy with psp, in all my career I've never even heard of it. Most of the time I don't mind I suppose im just having a "just leave me alone moment don't want to think about psp"
Tomorrows another day and I'll be fine, I just know I can let off steam on here and I feel better already
Richmond it is such a hard decision to make, I promised George I would look after him for as long as I could, hopefully to the end, but it is very hard, coping with all the things that PSP throws at you, makes every day more difficult to cope with, as Heady said in a nursing home they have the staff to look after them, keep them safe, and they the staff are not exhausted like we are. Your dad is not getting any younger, and it gets harder to cope as you get older, not sure of the answer, but you will both find the answer together. Must tell you this this afternoon I had such a bad headache, I had to go to bed, I was lucky I had someone here, I could not function, I felt sick, I went to bed for 3 hours, if no one had been here I don't think I could of coped with caring for George, frightening really brings it home to you what we are doing. Sending you a hug Yvonne xxxx
I just read your post from 12 days ago, "CHC appeal" What happened to that nurse that was to give your mums info to CHC...I am in the US so I don't know much more than what I read here...but your mum may need antidepressants...sort of a thing with the disease...if she gets into a deeper funk , this could affect her health and then nursing home will be a much bigger consideration....and then there will be the guilt....I think once you get mum on an even keel, and dad out of his transferring responsibility from himself to others....(This is sort of denial mode which does not lead to anything happy.)...They are both eldery , one is sick, could CHC not provide independent living where they live in an apt. but are in a semi-nursing facility...the nurses come by daily take care of the needs and he and your mum still have a modicum of independence.
As for you , I know that feeling of desperate never-gonna-end feeling....And I feel so ashamed and angry at myself....But I do and will get out of those times and thank goodness this site is still here at the end of my funk; being kind to me and ok that I went through what I went through....So You to can know that we are here...and that you will get over it...but you got to take some time for yourself....I think I said this before , an hour a day ....just set PSP somewhere and take a break...believe me it will be here when you get back!
The NEuro enablement specialist nurse attended the meeting last week with social services she was fantastic and really fought mums corner. The social worker agreed that mum was not for social services and she is for NHS, and she referred to Chc for them to come and complete dst form. We have the dreaded meeting next Monday.
Mum and dad refuse to take part in these meetings they both find it too upsetting, therefore I'm having it at my home. The problem is that dad changes his mind on a daily basis about what care he needs, we would prefer to keep mum at home if it's possible so I'm going to request as much care as they will provide. That's if we are granted Chc funding, fingers crossed 😀😀
Oh, I feel for you - I've just come out of a three week bad time where I just dragged myself around and even making a simple meal felt like moving a mountain.
Have you considered going to your G.P.?
They might offer you meds... SSRI's, but they me me drowsy and function less well so I always refuse them.
But
In your shoes I would be saying, "I need more support and I need it now!" and "I am just not coping and if this goes on my father will need to be in care and I don't want that."
Then
Ask the G.P. to telephone the CCG requesting an assessment for 'Fast Track' Continuing Health Care. If it is critical they will get the services in the same day or the next day.
Fast track is reviewed in three months. Generally they are so busy it can even be a year and all of your services are in place. When they do the Fast Track assessment don't forget to ask for some time off for yourself with a carer just doing the 'sitting'.
Please come back to me if you need more info.
Best
Kevin
(We got fast track in just those very circumstances).
Thankyou Kevin rapid response team are coming to see mum on Saturday from hospice potentially for admission for symptom control, my worry now is we were suppose to be having Chc meeting Monday at my home because mum does not want anything to do with it, but the assessor from Chc says she can't do the dst without mums consent she was going to mums before she came here to ask mum if it is ok. Mum able to nod her head.
Hospice telephoned me today to inform me of visit and potential plans for admission and they asked me to let mum n dad know. I realise I should have said no you phone them and tell them. It's so hard I am at breaking point but probably because I'm stressing about meeting Monday that may not even happen now
Yes, I stress too! Seems normal. I struggle all day doing caring, fight the good fight for resources with one hand tied behind my back and sometimes cannot decide whether to cry or rage. It's horrid!
Hey, tell the CHC assessors to got to the hospice! If they mumble ask them if they would like a lift.
Make it happen.
I will tell you this... May the gods help any assessor who turns down a CHC application of someone in a hospice... They wouldn't have a leg to stand on!
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Don't want to join this group! (Ranting about diagnosis)
Safety Button / Alarm Button
Absolutely unbelievable - not in a good way!
New Diagnosis and Struggling
