Wednesday, April 24, 2013

The Long Goodbye continues...

In February I got another call from the nursing home. It was 1am in the morning and I could hear the phone ringing somewhere in the distance. I stumbled out to the lounge room and answered the phone with a groggy voice, trying as hard as I could to sound alert and sensible.

It's your mum, she has had a sudden deterioration, she's dying and I don't think she has much longer. I don't expect her to make it till morning.

I feel that deep struggle for calm in the pit of my stomach - at the same time the nurse is giving me more details and my old nursing  brain is assessing the situation. Yes, I agree with her, after hearing her observations, this IS it. As the nurse says " I know she has pulled through before, but she is not going to pull through this time - she's dying." She checks with me once again - not for resuscitation - not for hospital transfer.

I feel incredibly calm now. Calm because I need to do what needs to be done. I've always been like that - calm in a crisis, calm when there is distress around me. It's a blessing and a curse.

I make several phone calls and then I call the nursing home back. I will wait till daylight to come down. The back roads I travel are too dangerous in the middle of the night. I will call again before I leave.

I carefully pack everything I will need for the funeral service. I phone before I leave and they tell me she is still here somehow.

We sit for the morning bedside vigil. I could be OK here, on my own just sitting. Why must they try and comfort me, talk to me, chatter mindlessly.  Inside I want to scream to be left alone. Let us walk this last part of the journey together, just mum and I. I'm OK with her, with her dying, with THIS. Why can't people just BE?

After lunch I can stand it no longer. There is no peace here for me. The time alone I want with my mum is a dream, a wish a fantasy of how I thought it would be. I let it go and accept somewhere inside of me that I have no control - surrender...

I go out to the cemetery and we organise and pay for the plot. It needs to be done and it's one less thing that I'll need to do tomorrow.  We are all exhausted, but after dinner I go back to the nursing home for a while. She is worse, her colour is blue/grayish, pulse is weak and thready. Yes, it will be tonight.

I decide I will not stay and try and sleep in a chair. I tell the staff to call me and fully expect to be woken up - my clothes are ready to step into and the phone is next to my bed. I'm staying less than five minutes away.

Sometime in the morning I wake up to find it is daylight - no one has called. When I arrive she is responding a little. My heart sinks...  As the morning goes on she improves, eats a little thickened fluid for morning tea. Her pulse is stronger now, her colour improved.

I want to shout and shake my fist at something, someone. What cruel, sick twist of fate is this?  SEVEN YEARS  of suffering. To lie in a bed, being turned very two hours, her once overweight body is like a skeleton now, bones showing through her skin, sunken eyes that recognize no one.  WHY would this horrible death be prolonged again and again?

Outwardly of course I have I have it all together. But I'm just done with this. I am done with walking up to the brink of death and then taking a step back. I am done with this private hell of anguish that I carry around every day that is unrecognised, unacknowledged.

I feel like a stranger here. The staff don't really know me, they have their own relationship with her. They just see an absent daughter who visits every few months. I, who was my mothers carer her whole life, feel like an outsider here. I look around the room and see that other photos dominate the room, photos of her with other family members, or attending things at the home.

I am not a part of my mothers life anymore.

It hits me like a rushing wind that I am not really her carer anymore - I have been replaced. I feel redundant in my mothers life now.

We stay another day. I do all the right things and listen to staff and put up with the chatter. They are good people, they love mum and I wanted that. Early in the morning on the day we leave I go in early, and finally manage to snag an hour alone with her. We sit in peace, in silence together... this is all I wanted - I soak it up, Then it's time to go.

Time to go back home, to work, to explain that my mum pulled through again, to continue to walk and talk and 'live' life as if it's all OK.

Yes, my mum is dying from Alzhiemers. It's been seven years now... and it's not getting easier...


Wednesday, November 14, 2012

Three years on...

From time to time I've come back to this blog over the last three years. Came back to read my memories of caring for my mum, to have some tears and some smiles as I read my old diary entries. Three years on and I feel it is time for me to share my diary here again. I need a safe place right now and so here I am again.

So what has happened since I last posted...

My mum was moved into the locked dementia ward and very quickly deteriorated. It was distressing to watch and frustrating as someone who has run dementia wards. The ward was understaffed and  not trained adequately in managing dementia behaviour problems. Mum continued to gain weight and was often distressed and crying in the ward. The response was to medicate her and of course that affected her mobility which frustrated her even more.

During this time I became very ill and was unable to work at all for almost 6 months so I could not visit. I had added complications of 2 episodes of pnuemonia and a partially collapsed lung. I lost my voice for a long time and so was unable to communicate much at all with anyone, let alone try and resolve the problems with the nursing home. Of course this added even more financial pressure and I ended up feeling very depressed.

Once I was well enough to visit and try and sort out things out I moved mum to a new nursing home that is dementia specific, well staffed and the staff are very knowledgeable. If there is a heaven on earth for those with dementia then this place is it.

Within a month mum went from being unable to walk unassisted to walking independently. They immediately put her on a monitored diet and she steadily lost the excess weight. All the medications were stopped except for her Aricept. My mum went back to being calm, happy and agreeable. Thats the difference between those that are educated and staff facilities properly and those that don't.

She stayed in that unit for about 9 months and was very happy there, but she reached the point of being unable to mobilise or feed herself or engage in the activities and the decision was made to move her to the high care ward.

And that is where she has been for the almost 2 years now.She is like a tiny, frail baby new born bird. Her body is shrunken down and curled up. She no longer chews her food but sucks it from a cup. She sometimes chatters away but it is unintelligible and most of the time she dozes between second hourly turns. In the evenings the staff open the windows to let the lovely bush air in and the sounds of the birds and morning kookaburras. They play her church music softly for her in the background and they tuck her up, all clean and sweet smelling like a newborn babe. I have often gone to visit and they do not know I'm coming. I have never once found her distressed or uncared for. They are angels and there are  no words to thank them for their love and care to her.

I have twice been called to come quickly as she was not expected to live - but she pulls through.And we go on in this journey together.

I miss her. I really do.

Tuesday, September 15, 2009

The financial costs of caring $$$$$$

Mums illness has cost us a lot of money. I estimate it set us back at least $50,000 in added costs and lost income. My mum had run up bills, lost her entire savings to a con man and had given away assets including the home. Dealing with the creditors was a nightmare. And no, I can't get anything back.

I also had to close my business when all this started and DH was laid off work with a payout of <$4000 after 9 years of service. I had to take a lot of time off work with no pay when she was very ill.

Don't even mention respite care !!!  what an expensive joke that turned out to be!

After we used up our savings we turned to the credit cards and over the last few months that I've been sick and unable to work they have just about reached their limit. My once booming business is reduced to a couple of hours a week. So financially we are really strapped and most people would have no idea.

This morning I opened the mail and as well as our family bills I have Mums bills:  a chemists bill for $47 and a bill for incontinence products for $73.  Mum has put on even more weight and most of the new clothes that I bought her six months ago no longer fit, she urgently needs all new clothes for summer. I just can't pay for it all out of her pension, it simply doesn't cover it and I am very thrifty with her money. Her account has a total of $103 in it.

I feel like I'm watching my life go down the drain. Before all this happened we were not wealthy, but we had sensibly managed our money and could see that once our children left home we would be able to increase our retirement savings and pay off our home for a simple, but satisfying retirement. Now it's frightening how much debt we are carrying and how little we are bringing in. I wake up at night worried sick about finances. I am going to see mum in a few days and the truth is we can't afford it. I feel angry that this has happened to her and to us and that there is no solution or anyone to share this with other than the blogosphere.

sorry if this sounds depressing, but as I've said before, this blog is the only place I can share this stuff, it keeps me somewhat sane.  add to that I'm meant to be 'resting up' and not stressing.... yeah right. at least the weather here is beautiful and the garden is blooming, at least that's something good!

"a penny is a lot of money if you have not got a penny"  Yiddish proverb

Tuesday, September 1, 2009

It's my turn now...

For the last few months I've been very sick and unable to do much at all and I haven't been able to visit mum or talk with her on the phone until yesterday. When I phoned her she was not really sure who I was but she was happy. She couldn't remember anything she had done recently to talk about but she told me she had lot's friends and that she likes where she is living. 

After talking with her I felt relieved to hear her happy and settled. But it's also strange when you can't share what's really happening in your life with her. I can't tell her how very sick I've been, or that we have a lot of financial problems to sort out. There's no point in worrying her. But there have been time over the last months when I just would love to have had my mum to talk to. I really miss being able to visit her, but it helps to know she is not missing me.

I have finally completely cleaned out her old room from when she lived with us. It's empty now, waiting to be painted and turned back into my study again. It's taken me almost 2 years to clean up a little room, just 2 X 2.5 meters. But I could only cope with a little bit at a time, too many painful memories. I'm glad it's done now. It feels like a milestone has been passed. I'm looking forward to having a quiet space to read, draw, meditate, sew and just be in the silence again. It overlooks the garden and it's my favourite room in the house.

I think that all the stress of the last 4 years has caught up with me and ended up in illness and burnout. I am only working 8 hours a week ( instead of 40) and I struggle to get through it. I just feel I can't cope with other peoples problems at the moment. Especially since I mainly work helping people with traumatic grief! I have my own grief to manage. But if I don't work there is no income and our savings have run out now. My Dr tells me I need lots of rest for my body to heal and that I need to lose 70 lbs.

I feel that I just need a 6-12 month break from everyone and no demands on me. Just time to rest, grieve, regroup and regain my health. I have some serious health problems to recover from and that is limiting how much I can work. I just want to simplify and downsize my life so I can take a break from the world. 

I don't feel that I am depressed (I was many years ago), but I think if I don't change things that I could end up that way. So mum's doing fine, she's happy and well, her memory is deteriorating rapidly but she doesn't know that anymore. Now it's time to heal myself.

Tuesday, June 2, 2009

Why is everyone so afraid of feelings?

In my day job I spend a lot of time reassuring people that it's OK to have their feelings, whatever they may be. I create safe spaces for them to just feel, express and move on. There is no judgement.

People are so afraid of their feelings, and I think even more afraid of other peoples. They want to rush in and change thing, cheer them up, chastise them, STOP them, because it makes them uncomfortable. It's their own stuff.

I guess I see the same thing happen online as well. I have another blog, I don't talk about how I really feel over there. I guess that's why I created this one. I just want to be honest about how I feel, and not be judged.

Simple really, just trying to write about my experience as a carer, from the inside out, not prettied up.

I guess I write it to help me, and if it helps you then thats a bonus.

I went out to lunch with a friend a few days ago. She tried to be understanding but she doesn't get why I go and spend time with mum every few weeks when she is starting to forget who I am.

" She's in a safe place, she's being well cared for... you don't need to see her that often. She doesn't even remember you've been."

I know she meant well...

I told her a story about my mum.

When I was only a year old I was very sick and I had to undergo several operations. My mother was only 26, her marriage was already in tatters. She phoned my Dad and told him I had been taken to the hospital for surgery.

He told her he was too busy to come home...
... and he was busy... with another woman...

Those where the days when parents had restricted visting hours when children were hospitalised. Just a few hour each evening. Nothing like the constant access these days.

On the morning of my operation my mum arrived at the hospital. She was told to go home and come back in visiting hours. "Anyway ... what's the point of you being here, there's nothing you can do to help! " was the staffs irritated response when she became upset.

Crying and alone. My mum took up a seat in the corridor near the operating theatres. She refused to go, she told them, until I was safely back in the ward.

The staff gave up trying to make her leave and left her alone. A bit later an old lady came past and saw that she was upset. She sat down beside her and, on learning that her a one year old baby was having surgery and mum was waiting against the rules, decided to sit with her.

And so the two of them sat quietly together in the hall for the next few hours. She was a stranger, just someone walking by. But she stayed and sat, and gave my mum the support she needed to get through.

Eventually a nurse came and told them I was OK and they should go now. Mum could see me later that day in regular visiting hours.

Thats just one of the stories about my mum that explains why I go and visit often.

Did I 'know' that she was in the hall the whole time I was being operated on when I was a baby? Did I understand the distress of a young mum, with a seriously ill child who's husband was 'too busy' to come?

Whether I knew she was there makes no difference. My mum sat in that hall and defied the rules for one reason. I was her child and she loved me. Where else would she be when I was sick?

Thats why I go often and visit her, even though she's forgetting who I am, and that I was there.

She's my mum and I love her. Where else would I be when she is sick?

I had no other explanation for my friend, who just shook her head at the 'waste' of my time.

And that little lady that sat with my mum and kept her company. No advice, no trying to make her feel different, or trying to move on her from her vigil. Just willing to be present at a time of need.

I guess thats what this blog is like for me. Just a place where I can sit with my experiences and feelings and let them just be what they are.

Thursday, May 7, 2009

Mothers Day on a runaway train.

I'd planned to spend the weekend with mum for mothers day, looking forward to seeing her again, hoping she hasn't deteriorated too much in the last couple of weeks. So I booked to go down for a few days. Then I got a phone call today, when can I come down again, she's not doing so well, she deteriorated even more since I saw her a few weeks ago and can I come down soon and meet with them again, we need to arrange specialists appointments.

My heart sunk...

I just feel so powerless, here we go again down this road that is only leading to one thing.

My mind fills with questions, Is she happy? or is she fretting again? Will she know who I am when I tell her tomorrow or is the memory of me all but gone? Is she still pacing and chewing and rubbing her hands?

and while it might sound awful ... " how can I pay for this?" she has no money left in her account and the costs are mine alone to bear..... I feel an awful fear in the pit of my stomach..... I just can't afford time off, but I will take it, I couldn't live with myself if I didn't. I'm so tired of feeling like i just start getting on my feet and then it all gets sidetracked.

I want to spend all the time I can with her and I can't afford it. I dread what is front of us, I really do.

.... that runaway train just sped up again...

Saturday, April 25, 2009

Out of the blue...

things happen that just hit me hard.

Yesterday I was busily reading my way through work emails, not thinking about mum at all. Then I opened an email from a bookshop:

"Books for Mothers who love to read"

I just felt myself getting all teary, in an instant it hit home that MY mum, MY mum who LOVED to read, can't read anymore.

It's just unimaginable.....

As a kid growing up I lived in a world of books, imagination and the wonder of a good story. Every evening I would have to do my spelling and read out loud to mum as we cleaned up after the evening meal. She would prop the spelling book on the kitchen window sill and we worked our way through the list. Now spelling was no small matter in our house. My mum was known for marking the mistakes in the local newspaper with texta and sending a copy f the corrected paper back to the editor on more than one occasion!

Mum hasn't been able to spell now for a long time...

After spelling lists came the reading. Her words are etched in my mind " Don't just read it! Pretend you are painting a picture with the words! Make it come alive! " ... and I would return to my reading out loud knowing that I had better create that magnificent, emotional, colourful picture with my words, or I would be reading my homework out loud again until I did. There was no rushing through the reading homework at my place.

I just loved to read, and it was my mother that taught me the joy of books. It opened up world that I otherwise would never have known about. I was a daily visitor at the school library, signing up to be a library monitor as soon as they would have me; staying up until I finished my schooling. I always had my head in a book. And every night I did my reading out loud to Mum, learning how to paint pictures with my words.

When I was 10 years old I started reading the bible readings at church. I have often been told what a beautiful reading voice I have. One of my happiest memories is reading every night out loud to my own children. Reading them the classics, Treasure Island, Lord of The Rings, Banjo Patterson and more. It would never have happened without Mum's influence.

The other thing that happened when I was 10 was that Mum gave me her favourite books that she had kept: Emily of New Moon, Poppy Treloar, The Secret Family, Anne of Green Gables. I still have them, they are in my bedside table, old, well worn and well loved by us both. Emily of New Moon soon became my favourite too.

My mum read her bible every day. She had numerous translations and versions. She didn't just read it, she studied it. I have her first bible she had a child and I have the bible that I remember her reading growing up. It's filled with notes, and comments and cross references, held together with sticky tape.

And now my mum, who has read every day of her adult life, who showed me a world filled with wonders through a love of books and stories, can't read anymore.'

Last week when I was visiting her she was holding a book, as per usual. I asked what she was reading:

"I''m not reading it! If anyone comes, I just open it." and so she opened it, upside down and showed it to me... "See"