When those helping need help!

[Emsy]

Hi,

I wonder if anyone has any coping techniques for when they start to feel they are 'unravelling'?
I am the only person available to help & support my parents other than the social care they receive at home (mum wheelchair bound with MS, Dad moderate Alzheimer's)
Together my dad can help my mum physically & she makes sure he eats & drinks & organises shopping/finances etc but we are moving from one crisis to another at the moment & if it isn't one of them in the hospital it's the other. One without the other just doesn't work which is where I step in - it breaks my heart to see them struggling so.
I have had to stop working & am living part time at my parents & part time at home with my husband.
He is very supportive but needless to say our finances/relationship is suffering & i feel as though I'm being pulled in all manner of directions.
If I fall apart we are all up the creek which is starting to freak me out a bit as its all feeling a bit much at the mo.
Mum was admitted to hospital again today as her angioplasty from last week has gone wrong & there's a risk they may have to amputate her lower leg!!!
It's one thing after another :0(

Love to all caring/coping tonight xx

 

[joanne d]

Hi Emsy,

I feel for you. We go through such a rollercoaster of emotions. I am struggling myself so I am not much use on the advice front but I do wish you well. Take a look at the replies to my recent posting and of others. You will find some words of wisdom from the saviours on this forum.

Big hugs. x

 

[Emsy]

Mum has to have amputation

Thanks for your kind words.
Mum signed the consent forms for her leg to be amputated last night and is going into surgery as we speak. Our worst fear.
How much does a person have to take! She had had MS most of her life with all the added complications, a husband she is losing through Alzheimer's and now this.
She is such an amazing person & refuses to let anything break her spirit but this might just do it.
The world is a cruel place.

Xx

 

[meme]

you are doing so much...un ravelling comes with the territory...but you can't go on like this, a talk with your partner and a good think about what is best for you, your family and your parents ongoing situation.....even if you somehow free yourself up a bit that will be a good outcome

 

[sunray]

couples care

Oh dear, that is tough, an amputation on top of MS, I don't know what you think you can manage with your parents but I would start applying for as much help as you can get now. Neither can take care of the other at least until your mother is fully recovered.

At the nursing home where Ray was lived a lady ( in her own room) who only had one leg. Her husband lives in assisted care close by and was brought over to visit his wife each day by one of the nurses aides. He stayed to lunch and the aide came again and took him back. It was the first time I had seen that so I was pleasantly surprised. I don't know if something similar would be able to be worked out for your parents.

I can understand that your world is unravelling, I certainly felt that when I looked after my mother and my husband for two years. You probably don't feel up to it but you need to be pro-actvie and find out what help is available and how to access it as soon as possible.

Sue.

 

[Emsy]

Couples care

Hi Sunray,

Thanks for your reply.
I'm currently looking at something similar to what you mention .
There is a care home with specialist dementia unit that also has 2 bed bungalows in the grounds.
The idea being they move to the bungalow together and get help with mums personal care (as dad doesn't need any care as there's nothing wrong with him according to him!)
and then come the time when dads Alzheimer's is too much for mum he can move into the care unit next door & mum can see him whenever she likes.

Sounds ideal in theory & mum is all for it but getting dad to agree to a move is world war 3 right now!

So sorry to hear that you have had to care for a parent & your husband.
I don't know how people cope - I guess we just get through xx

 

[Emsy]

you are doing so much...un ravelling comes with the territory...but you can't go on like this, a talk with your partner and a good think about what is best for you, your family and your parents ongoing situation.....even if you somehow free yourself up a bit that will be a good outcome

Thanks Meme - I'm looking at getting some extra help from the lovely agency that supply mums personal care - dad is used to them coming for mum so while she is in hospital they can still come and help dad with washing/cooking dinner so I can actually go home for a couple of days and get a hug from my husband! x

 

[Butter]

You are doing brilliantly - and you and your parents have too much to contend with. Obviously.

This may sound harsh, but I would not discuss the decision to move to the bungalow with your dad. Just go ahead and do it all and if he tries to resist at all:

'of course we're moving ... mum has lost her leg now ... we'll be lucky if we ever get her out of hospital at all'

'we have to be all ready for when mum comes home'

'mum can't leave hospital until all this is sorted'

It sounds as if your dad sees that your mum needs care - so she will have to go there. And he won't want to be left behind.

I wish you all the luck in the world.

 

[janetlynn]

My heart goes out to you!
I wish I could say something that would help.
Keep posting...you are not alone.

Janet.

 

[Pullinpants]

Strength from within

Hi Emsy,

I have an incredible amount of respect for you all - can't imagine the difficulties you have faced. I know how it feels when it gets too much - last night I was just about to climb in the bath when I received a call from my Dad asking me to go round and sort my Nana out - she'd set off the fire alarm!! Very tempted to say no I reluctantly ignored my bath and went round. 2 hours later - Nana fed, watered and medicated for the night - I got home to find a very cold bath. Not ashamed to say I broke down, utterly exhausted and desperate for this to end.

The only encouragement I can offer you is that there is a light at the end. As the old cliche goes "what doesn't kill you makes you stronger"! We have now spoken with Grandad's care home and they have found a room there for Nana too. As sad as it is to say goodbye to their home of 30 years and the memories that brings, it is a great relief.

I think experiences like this can really teach us a lot about ourselves and our families - the way we come together to pull through and put on a brave face. Yes eventually we all have moments of exhaustion and cries for help, but it's the moments after those when you look back and realise what you have come through that really make you stronger. Hindsight can be wonderful at times!

For what it's worth, my coping strategy has only recently been TP and days like today when I read your story, remind me that I'm not alone in this. I hope that the responses and encouragement you receive make you feel the same. Chin up, you're doing an incredible thing and your reward will be knowing they are safe, cared for and loved.

Thoughts are with you x

 

[Big Effort]

Dear Emsy,
You are absolutely remarkable. So is your husband to share you with your parents. Old age and all the illnesses and complications that can follow are tough. Add in dementia and it is a burden few can carry. I have so much respect for you for even trying. Hope your Mum is doing well, and I send you gentler times ahead. You are wise to seek out all the support you can, as living with parents and hubby part-time is not a long-term solution, at least it wouldn't be for me.
Hoping that you find a solution that far, far exceeds your expectations. May things just go right for you and yours. Big hug and be very proud of all you have achieved so far. XX BE

 

[Emsy]

Huge thanks

Wow, thanks so much to all of you for your help, advice & support.
I am so genuinely touched by the amazing words of encouragement & support from people I have never even met I am in tears.
You are all amazing people & should be really proud of yourselves.
Love to all xx

 

[Emsy]

Well after an extremely traumatic week - juggling looking after dad & his fast progressing Alzheimer's, visits to the hospital to see mum with severe MS who was asked at midnight tuesday to sign the consent forms for her leg amputation after her angioplasty was ****** up, having to stomp around the ward trying to organise the shambolics of being on an 'emergency' surgery list but not being 'life threatening' so constantly being starved all day only to told in the evening you've been 'bumped' down the waiting list again - my mum finally got her op yesterday afternoon.
Amazingly she called me on her mobile last night to say she was sore but fine & couldn't bloody wait until she can have a G&T.
The strength & spirit of that amazing woman never ceases to amaze me.
She has now said she doesn't want to go back to their house again & wants a fresh start in a nice little close care bungalow near me.
Dad can't see why she won't be able to continue as 'normal' back home & he's quite happy where he is & doesnt want to move, so we have decided on tough love & basically as someone suggested taken any part of the decision out of his hands.
If mum moves he will go with her anyway.
Mum has also asked me to find someone nice for her to go for respite once she gets out of hospital so she have some peace for a couple of weeks & can be Molly coddled for a change. Dad had agreed to go with her so maybe this will be a good thing for him.
We know moving may well set his Alzheimer's back as he is such a creature of habit, but its only ever going to get worse & we have mum & well, to be honest me to think of too.
I will need to start work again soon as money is getting tight & hubby misses me when I'm living at my parents.
Hey ho - let the next chapter begin.
Today my sis is over at dads so I am sitting in my own bed with hubby drinking a cup of tea.
And relax xx