Hi

[kacee]

Hi,Another newbee.

I am 48. My mum was diagnosed in 2000 after 2/3 years of well hell I suppose. Now 2008 she is still being cared for in her own home...after blood sweat and tears. I am supported by social services who allow me EMI funding to add towards home care 24hr live in. It has been very hard physically and emotionally. I guess I have asked a lot of my family ..husband and 2 sons, over the years. No holidays,spontinaity..constant on call status and all the hassle of DPs a (total waste of time and made me ill)
dealing with finances..carers...home maintinance...but I think it is worth it to see my mum.

Anyhoo I feel that I have reached a kinda burnout. I grieve ...in a circle and always end up back at the start.
i do understand bereavement..I just dont know how to cope with this groundhog day scenario. I am so tired so so sad and now with my youngest leaving home I feel desolate. im crying as I type. I know i am caught in a negative spiral and I have done all the things I can think off to get off it but its all at once
I suppose. Hormone changes..sons away..mum not able to comfort me as she would have.

I am finding the personal care particularly hard. I cant just be professonal and get on.. I just dont want to clean up my mum..and yet I am privaliged to be in a position to do so and have the ability.I feel so guilty and ashamed. Spoke to someone who suggested " this is as good as it gets" find a way to surf the pain and in the end what ever that is ..the end.. things will resolve.

Ok sorry I am ranting and howling maybe thats all I need... off load. Noone to listen. You lose contact with friends in this situation. I am lucky enough to work parttime and collegues very supportive.My dad died in 94 with a brain tumour we nursed him at home . Mum never recovered she went from severe depression to alzhiemers. She was only 60 when he died.

On a good day i have a wicked sense of humour. I am good at my job...helping others recognise their strengths and use their abilities to over come or survive lives pit falls...just fallen into a bloody big pit of my own.....a
thanx for listening..sorry to bray.. hoping this eases my discomfort...then I will be in aposition to share the amazing wealth of coping with dementia and authorities i have amassed.
Kx

 

[rhallacroz]

Hi There

Hi K
I have just sent you a private message feel sure where in a similar position. It is a very hard road.
All I can say is that if we were talking to our best friend we would probably give the advice that the time has come to hand over the reins to the professionals but hey that is not at all easy.
I do hope that you can find friendship and kindness on here. I certainly do and all TP members are like family to me. There will be plenty of help and support along the way.
Just keep smiling and posting.
Lots of love
Angela x

 

[Lynne]

Hi Kacee

Just a quick line to say I do understand many of the things you are feeling. My Mum's mid-stage Alz (so far as I can judge) and things are getting difficult now caring for her alone at home. Like you, I lost my Dad to cancer (many years ago now, but still hurts) and now this. No family support (as in simple lack of family anywhere near enough to be helpful). Life sucks.
No wonder you're depressed (as in suffering from clinical depression, a health issue - see your doctor) who wouldn't be!

Best wishes

 

[rose_of_york]

Dear Kacee

Please don't feel ashamed and guilty - you are doing what you can and you have to have a life of your own. I know that if it comes to it I will not be able to do the personal care and cleaning up - not everybody can deal with this, and if you can't it isn't a weakness.

Barbara

 

[Grannie G]

Hello Kacee,

From where I`m standing, if you`ve been caring to this level for more or less eleven years, it`s no wonder you`re suufering burn out. It`s time for a break.

I think you are amazing to have taken on so much and bring up your own family at the same time. With this level of tress, something`s bound to give, and that something sounds like you.

I would seriously consider residential care now, or at least start off with respite care. If your mother went into respite care for a couple of weeks, every so often, it would give you a chance to recharge your batteries.

I know you will find support on Talking Point [TP] and I hope it helps.

Take care xx

 

[Rose2008]

A lot of loss

Hello, kacee,
Sounds like you are dealing with a lot of grief and loss right now, losing the children you comforted as well as the mother who comforted you, its really hard. You must have learned a lot from your mom about caring, and I guess that's quite a gift.

 

[helen.tomlinson]

Hello Kaycee

It seems to me that you have done a fantastic job but that at the moment you are not well. I think you have a real responsibility to yourself to allow yourself whatever it takes to get well. Maybe GrannyG is right and you could now consider respite or residential care. If you are well, your mum will have the best. If you can't do it for yourself, then do it for her. I think talking point is fantastic and you seem to benefit greatly from it but it has its limitations and I wonder whether it's enough to help you back to recovery from burnout or depression?

Very best wishes Helen

 

[gigi]

Hello Kaycee,

I think we're all with you on this one...

I just dont know how to cope with this groundhog day scenario.

Groundhog day is exactly how it becomes..and it's extremely wearing.
You do sound as though you need a break..several of the others have suggested some respite care for your mum..
If you carry on in your downward spiral you won't be able to help her..so please think about it.
You've had such a lot for such a long time..no wonder you're so low..
Be kind to yourself...

Love Gigi xx

 

[kacee]

thanx

I cant thank you all enough for taking the time to reply to my post. Every post with a name was a person who can begin to imagine how I feel.
They did make me weep...maybe I have held back too many tears over the years,so i will view this as healthy.
I try to keep things in perspective. But the respite thing oooooh. Had 2 bad experiences. I had to go every meal time to feed her cause it takes time. Staff dont have that time.
I wont even go into the rest... Left me damaged, God knows what it done to mum.
I know its an option...but it will have to be the one when all else fails. Like I die... Well maybe not that severe.

On a bright note my husbands daughter gave bith to a baby boy today 9lb 10oz . Both well. Too far for me to go and see as yet...yip... I know but It takes more than a few hours to sort out carer cover but I will make it happen.

Thanx again thinking of u all K x

 

[barraf]

Hello Kacee
Your timescale sounds very similar to mine, Margaret too was diagnosed in 2000 after at least 2 years disruption. The difference being that I don’t have to run another home and look after a family, neither do I work having been retired for 20 years. You have my total admiration for the way you have coped and I am not surprised that you feel the need to let off steam. Well this is just the place to do it as we all know the sort of problems this disease can bring, and the associate problems of dealing with social and medical workers.

I know you have had some poor experience with respite care but I would urge you to look into it again, I would not entertain it for a long time, but last year things began to get on top of me and I agreed to give it a try. I have found it to be very beneficial in recharging my batteries and letting me carry on caring for Margaret at home.

If you do find somewhere suitable make sure you visit the home before your mum goes in, and discuss with the manager what needs to be done with regard to feeding and personal care of mum. If the staff haven’t time to feed her she is in the wrong place, and if you are going in daily it negates the purpose of the respite. I take in a written list of what is required each time Margaret goes in, and the manager said on one occasion “I wish everyone would do this, because we don’t always know just what is required.”

Hope this is of some help.

Cheers Barraf

 

[kacee]

Thanx Barraf,
I a have a care plan that is idiot proof. Like totally. The last home thought it was wonderful. My last job was working with adults with challenging behaviour ( they were less challenging than some staff) hence my dot the Is and cross the ts.

i spent time with the staff in the homes to get their perspective ...2 seperate homes different care providers..and ...no time ...short staff..insufficient training... When mum came home the residents cried because my vists would stop.

Sadly I know the system and have friends on the "inside" Since private firms took over..slashed the wages and empoy anyone like anyone. Some of the care practices are mind blowing. this is Scotland Im talking about.

I have just booked a holiday in June our first abroad alone since 1984 wow . Going to Sicily for a week...come hell or high water... I just hope I enjoy it and dont make hubby miserable.

I tripped over a flex today and mum beamed so good to know the sick sense of humour we shared is still there lurking waiting for my misfortune.

Its amazing how much a smile does for us. Mum hasnt spoken for years,cant remember her voice. but. she can still throw a look. I know it right away.
Strange how things that really annoyed me about my mum now give me a deep joy....shes still there.... The neuro psycologist tried to tell me other wise. No doubt thinking it would comfort me.
i had to tell him he was wrong..very very wrong.
Thanx again
Kx