Tuesday, February 12, 2008

4 Months since Nursing Home Placement

Mum has been in the nursing home for 4 months now. The time has flown by and I still feel like I am trying to keep up with 'life' a lot of the time. I have just come back from a visit and it was really nice to see her looking so well and sounding a lot happier. Since her admission she has had two different sugeries (minor) and she should not require anymore surgery at this stage.

So how has life changed in the last 4 months...
I am finally sleeping for 4-6 hours a night without waking. It has taken 3 months for my sleeping patterns to return to any semblance of normality. I would still like to sleep more, I am still tired most of the time but in the last month there has been a definite improvement and I am not feeling the extreme exhaustion that had been my constant companion for over 18 months. My concentration and memory are still not back to normal.

Financially I am stuggling to recover from the loss of income that occurred when I could not work. I have taken a new job which I enjoy and even though it is very busy and I could earn more money elsewhere, it is less stressful that my previous work. I could do some extra work to make money failry easily but I think that I would burn out completely if I did. So I worry about finances a lot but I have to back off on the workload for my health.

My health concerns me. I was diagnosed with Hashimotos disease a few months ago, a result of stress from caring for mum and the family crap that went with it. I already have celiacs disease and about a year ago had a cancer scare which turned out OK. I worry about getting Alzheimers. Both my mother and grandmother had early onset Alzhiemers. My medical history is starting to mimic thiers, the next disease on the list would be diabetes, another auto immune disease. My goal for 2008 is to focus on my health first, my finances second.

I look back and wonder how I survived it to be truthful. Sometimes I really would like to just sit down and tell the awful truth of what it was like to someone who would not offer me platitudes. I might blog about it more this year, kind of "blog therapy". In some ways I feel like life stopped the day she collapsed and got taken to the hospital where she was resuscitated. It was touch and go for weeks. I feel like I have been on automatic pilot since that day. I am almost to afraid to feel the emotions of what I have been through for fear that I may not be able to keep going if I do.

What has surprised me is that most people think that now Mum is in a nursing home everything must be great and I must be feeling back to normal. I am still struggling a lot of days. The first week after mum was placed a colleague overheard me say that I was really tired when asked how I was. She said " But I thought your mother was in a nursing home now?" as if I should be magically better overnight.

This weekend after we had to make an unexpected trip to see her, spent an unbudgeted $400 in travel costs and paid $300 in bills for her from our non existent savings (she had no savings and I inherited a lot of bills she ran up in her confusion). We spent 11 hours travelling and I got back late Sunday night. Monday morning I looked like I had a hangover and this same woman at work says:

"Whats wrong with you, you look dreadful?"

" I've been down to see mum, we had to break some sad news to her"

She replies: " I thought you said she was much better.".... and immediately launched into a conversation about her troubles...

...some people just don't get it....and people don't want to hear about it....

So 4 months on and mum is happier, healthier and much less stressed. I have no doubts that I made the right decision now. I am glad I took the time I needed to make that decision. But the cost for me has been health and financial problems. Life is looking brighter than it was 4 months ago. My family life is better and everyone is happier. I am happier most of the time, but I wish I could stop my mind racing, that hasn't stopped but it has slowed a bit.

I wish I didn't have to pretend though that I am fine, because I'm not. People do not want to know how I really am when they ask. People do not want to hear the stories of dementia sufferers and thier families. It's not nice and they would prefer we keep it behind closed doors thank you very much. I think this year I am going to write more about what happened, I need to do that for myself.


Robert said...

I'm pleased to hear that things are (slowly) getting better for you. I don't think that anyone wants to hear the problems of carers - they just can't imagine what it's like.

Best wishes!

A Single Man said...

I too am glad that things are better for you and that mom is doing well where she is.

On the topic of others don't want to hear: they don't want to hear about illness nor those who care for those with illness. I think that it's too uncomfortable for most to be discussing mortality.

And yes, those who haven't been in our shoes just can't understand, especially when dementia's involved.

I wish you all the best as you continue to recover from the stressful job of caregiving for a loved one.

Tilly said...

100% agree! One of my best friends told me how she hated to call me because it's always so grim - she really is a good friend, and wasn't saying "Don't tell me" - only that she longed for life to be better for me. But it made me feel awful, & I realised then how dreary it sounds to everyone else who hasn't trawled through caring for dementia - or for someone with a long degenerative illness. So I learned to shut up - or make a joke. Blogging really has helped because there are others in the ether who know exactly what it's like. I think I still modify the truth slightly but try not to. You write whatever you need to - I'm sure you're right, that it's cathartic. Those of us who care, will read and understand - and those who haven't been there and like Robert and A SM says, who simply don't want to know - well it doesn't matter so much what they think, does it? Good luck to you - I hope life starts to treat you kindly in 2008 and brings you joy. Tilly x

pablo said...

Oh yeah! take up writing about it. I know that it helps - it has helped me.

My wife & I went thru it for 8yrs with my mother-in-law & then for 7mos with my father-in-law. It drained me physically, mentally, emotionally & financially. Writing my stories is the one thing that kept me sane thru those days.

Those of us who have been thru it will read, understand, even feel what you went thru, and those who haven't may not (want to) know - and to others it may serve as an education. What really matters is that you would be writing for you - and to restore you to a state of normality.

So in my opinion - write away! I know I will be back to read it.

ChickPea said...

I just met Mr SM today, and his blog brought me here to you - and what a(nother !) wonderful find ! - how grateful I feel to you - my life changed so dramatically when my father-in-law with severe dementia died in mid-July. Very well done for getting a job - I am looking for a similar 'less stress but less reward' job, feeling the tiredness, hoping to move forward and find a new 'nomality'. You give me hope. Come back to "blog therapy" - we need your words, your insights, your honesty. We understand your grief. We accept your needs. Let us love you.

maz said...

Caring is such an emotionally challenging thing to cope with especially long term no wonder it takes time to try and find a balance again!
Some people will never understand in a million years and other people well, they're afraid to delve to deeply incase it's catching!!

maz x