Diary of a Carer...

The financial costs of caring $$$$$$

2009-09-15T06:19:00.001+10:00

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

It's my turn now...

2009-09-01T05:19:00.002+10:00

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.

Why is everyone so afraid of feelings?

2009-06-02T06:34:00.004+10:00

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.

Mothers Day on a runaway train.

2009-05-07T20:16:00.002+10:00

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...

Out of the blue...

2009-04-25T18:30:00.005+10:00

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"

Locked ward move coming up.

2009-04-19T19:51:00.002+10:00

Mum has gone downhill really rapidly in the last 5 weeks. She is out of the happy, placid childlike stage and now mainly worrying, stressed, paranoid and suspicious. She had one day that she was reasonably good on the weekend, she told me she was 11 years old at her last party! But the rest of the time she was stressed.

She has become a bit obsessed with one of the other residents and is now wanting to get married. She talks about him constantly, follows him round and is jealous of anyone who appears to get in the way of her being with him.

Her wandering has become a problem and the decision has been made that she needs to be moved into the locked ward for her own safety. It's not going to be easy, I think she will be quite upset by the move but it has to be done.

Every time I leave I know that I have made the right decision to have her there. She simply is too ill to be kept at home and she is so well looked after there. Even though I know what's in store for her, it just is all happening too fast.

De Je Vue

2009-04-12T07:42:00.003+10:00

Mum is going down hill fast as far as her dementia goes. She has become much more agitated and annoyed lately. She requires a lot of care and much more assistance with self care.

I have times where I can just can't stand it. It was easier when she was happier, but these last few weeks she is not happy. Sometimes when I'm in the car alone, or in the shower I have a bit of a cry. I just feel so helpless, and I can't be there for her. I feel so angry with the family for the way they have abused and abandoned her, and me!!

I don't even have enough words to describe how this feels... mainly I feel all alone in it. My family are great, but I wish I had siblings that I could share it with. I often feel just like I did when we were kids, and mum lived in an abusive relationship. My siblings split and I spent my childhood years desperately trying to take care of mum, keep her safe, and make her happy. Thats just how this feels a lot of the time. Like I'm a kid fighting something that's just way too powerful for me, putting on a brave front for everyone, but inside, I'm just scared and lonely.

Time out for me... can't wait1

2009-02-26T06:12:00.002+11:00

I have finally got around to organising some time out for me!! Oh I am so looking forward to it! I am going on a meditation retreat for three days. I told a few friends and they can't imagine having observe silence at meals, and outside designated discussion times, no internet, TV or phone. Me? I think all that silence sounds like pure bliss!!

It's on in about a month. We will do some meditating sessions, some discussion sessions and go for walks each morning. The theme of the weekend is reflecting on where where you are right now in lifes journey which sounds like exactly what I am trying to come to terms with.

You've got mail...

2009-02-24T20:58:00.002+11:00

A letter from arrives and I open it to find newspapers clippings about pensioners. Across the picture in large, shaky printing:

PLEASE HELP ME!!!!!!!

Letter from mum...

2009-02-10T20:42:00.003+11:00

I received a letter from mum today. She has sent me back a letter that I sent her a few weeks ago. The paper was A4 and instead of folding it to put it in the envelope she has just cut it to the width of the envelope so that it fits.

I know it makes sense to her in some way. Maybe she saw my address on the letter and thought it belonged to me. I suppose cutting the paper to fit the envelope makes sense as well... especially if you have lost the memory of how to fold a piece of paper.

I have to confess that I still have not packed up mums room since she left. The clothes are gone, but the furniture and some of her books are still there. I think I'm ready to pack the furniture away, clean and repaint the room and use it for something else. It used to be my office before mum came to live with us. I don't know what I will use it for now, but it's time to pack it away. The reality it that she is not coming home again, not even for a holiday. So that is my task for the weekend.

Latest visit...

2009-02-09T05:11:00.003+11:00

I went and visited mum on the weekend. I always leave with mixture of emotions. I feel reassured that she is well cared for and feels safe & loved at the home and I feel a longing to just be with her again. I sometimes feel like a kid again, I just want my mum back, but it's not going to happen...

The hardest part is that she does not recognise me. Before I went in I prepared myself, but it still feels so hard to sit down next to my mother on the lounge and have her look at me like a stranger. No recognition at all. She just smiled politely at me. When I told her who I was she was happy and hugged me. I am dreading the day that I tell her who I am and it doesn't mean anything to her any more.

What I noticed this time is that her initiative to do things is much less. She now gets up each day and goes and sits in the lounge reading. She will participate in activities but the staff have to come and fetch her and get her set up now. She was much happier this time, but much more passive, waiting to be told what to do next all the time. She is also starting to have more trouble finding words.

We had a really nice time together though. I just took her back to the motel room and we sat and talked while I painted her nails. Then we went for walk, about half a block, to get an ice cream and she was tired at the end of that. I found that after lunch she was falling asleep so our visit was about 5 hours total.

The good thing was that she remembered some of our last holiday at Christmas. She told me how much she enjoyed it, especially all the animals.

I feel like the clock is ticking down... I feel very helpless about what is happening, all I can do is make the most of the time we have left together, trying to look after both of us in the process.

thanks and ((hugs)) to my fellow bloggers

2009-01-22T19:48:00.010+11:00

...thanks everyone for leaving me such supportive comments... I was going to say you don't know how much it means to me... but I know you do since we are in such similar circumstances. I shed a tear when I got back and read what you all had written...

I came home last week from my holidays and it was good to have the break. I went and stayed in nice seaside town near where mum is living for a week over Christmas. I decided that I wanted to splurge and get a place overlooking the water which I knew would be a real treat for mum and for me. I suppose what has been on my mind is that with this recent deterioration this might be the last Christmas we have together where she recognizes me.

I'm really glad that I did it. Our lounge room overlooked the water and lots of kangaroos were roaming around the front yard during the day as you can see below!

This mother and her joey were very friendly and came up on our verandah to peek at us through the window much to mums delight.

There were people swimming and canoeing and we could just sit in the cool and watch it all from our lounge. Mum loved it!

I took her to the beach twice.It was a bit difficult for her as she has put on a lot weight and get's puffed really fast. Also her walking is now a kind of 'swinging' from side to side and she can't turn on the spot anymore so we couldn't go anywhere uneven.

I think the hardest part was that she no longer recognises me when she see's me, or in a photo. It's all happening too fast...

She is only 71.

When I arrived she looked up, but she did not recognise me at all. Once I went over to her and hugged her and told her it was me she was really happy, so she still know she has a daughter and her name, just not that it's me. A few times when I was down there she commented that she hadn't known who I was the last visit when I took her on a boat trip but she thought I was a nice lady so had gone with me.

My mother always would save every little Christmas present she had and insist on saving them to open on Christmas day. This time it was so out of character, she saw the presents and wanted to open them all there and then! We opened a present every day we were there which was fun as every time she got so excited!

I also can see some more suspiciousness and irritability in her now. There is one nurse there that has been wonderful and now Mum has taken a real disliking to him, accusing him of taking her things and going through her wardrobe. There is a real cranky side to her coming out. She told me how:

"He comes in here every day and asks me if I've had my shower! What business is it if I've had a shower!"

You know I had a comment on my last post which I know was well intended but I deleted it as it really upset me. Basically the person was saying you need to keep your sense of humour about it all.

It's the classic example of feelings of grief or sadness making people uncomfortable so they want to 'jolly' peiople up and tell them to look on the bright side instead of just accepting them where they are. Feelings are OK, they are not good or bad, they just are and I will continue to share them here.

This is the only place I can share my real feelings for a lot of reasons. I do have a sense of humour, and I can laugh about the funny things that happen. I also have sadness and pain at watching my mother die a bit every day and of knowing exactly what is ahead of us.

I plan on going down to visit again in a few weeks, I feel that this year I want to make the most of what time we have left where she can still get out and about a bit. I find that after lunch she is so tired and is ready to go back to the home.

I'll finish with a lovely quote and pic of me at the beach at sunset. I went there each night to sit and reflect. It was so peaceful and comforting to be surrounded by the constant sound of the waves and the sheer vastness of the ocean.

'When we honestly ask ourselves which person in our lives means the most us, we often find that it is those who, instead of giving much advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a gentle and tender hand.

The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares."

Henry Nouwen

It's time to resume this blog...

2008-12-14T16:44:00.003+11:00

Mum has now been in the nursing home for over a year. Up until recently she has been very happy there and settled. She told me on a few occasions that she is glad I made the decision to put her there.

Her health has gradually declined. She needs help with all activities of daily living to get started and encouragement to complete tasks. She is often incontinent and toileted hourly.

Her memory has deteriorated a lot over the last 2 months. Initially I think she improved as the setting was easy to manage so she wasn't as stressed but now I think the Alzheimers is catching up with her. She has trouble finding words, and asks the same thing over and over. She can no longer use the large print calendar stuck on her wardrobe with her daily activities on it. She has to be fetched from her room for activities, which she happily participates in once she gets there.

She remembers me and my children but doesn't remember the other siblings. They still have not contacted me since I bought her home from hospital over 2 years ago now.

The last few weeks she has started asking me to take her home. She has been telling me how much she misses me and her friends and wanting me to bring her back up here to live with me or in a home up here. It is just awful when she does this, she has been so happy and settled there. I know that this is all part of it. God knows I've been through this with so many Alzheimers patients and families myself as a nurse in charge of a dementia ward but it's just horrible hearing her. She is like a child pleading with me to come and get her.

I know that I can't bring her back here. If I do I will have to deal with all the people who caused so much pain and suffering for her and me in the past. I am just getting my life back on track now. About 8 weeks ago I left my job and re-opened my business that I had to close when mum got sick. I still have $20,000 in debt to repay that we ran up as a result of all this. I have paid back $8,000 so far.

So it seems that we are entering another stage of the illness and I need to blog to keep sane and try and survive it all.

4 Months since Nursing Home Placement

2008-02-12T04:50:00.000+11:00

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.

First Christmas went well.

2007-12-26T20:29:00.000+11:00

Yesterday was the first Christmas I have not spent with mum, and it went well for both of us. Mum spent the day with her sister and had a lovely time and I spent the day with my family. It is just not possible for me to get down to see her as I need to save money for her next trip to hospital (was supposed to happen 2 weeks ago!).

Mum always had breakfast with us, a big cooked breakfast of bacon, eggs, tomato, fresh squeezed juice. so I rang her while I was cooking breakfast. She was having a good day and was quite on the ball which was nice.

She will be continuing on the Aricept, her results over the last 6 months have been good on it. I think the biggest change I noticed was less word jumble and easier word finding. This reduced her frustration a lot and so the crying episodes stopped as she improved.

She is still confused though, and still has her bad days, but in general she is much happier now. I think she feels very safe where she is and the staff give her lots of love and affection which always helps.

Mum has made friends with another resident and they go for a 'walk' each day together. She often can't remember his name but he is a lovely man, very old fashioned and quite the gentleman. I am glad for her that she is making friends. Her social life is busy, with bus trips, concerts, craft, singing and a myriad of activities that she usually can't remember. It makes it much easier to know that she is busy and as active as possible, much more like the mum I remember.

Thankyou all for your kind comments on my last post, it has been such an emotional experience, and I am unable to share it with any siblings. My husband and children are wonderfully supportive but I don't like to burden them with too much of the family memories. Also sharing with you all is different, although we have never met I feel like you 'get' where I am coming from as only another carer can. So thank you :) and happy holiday wishes to you all.

2007-12-14T16:13:00.000+11:00

Gosh I can't believe it's so long since I posted. I do come here and I read everyones blogs, I feel all those awful feelings, and it helps. Reading other carers blogs really helps, but some days it hard.

I am finally sleeping better. Mum is very happy where she is and I can tell that she like the staff and feels safe and loved there. I find that I am keeping myself occupied so I don't have to think and I am not really getting much done at all. I am starting holidays tomorrow and I am almost afraid to stop being so busy.

I feel good when I am at work and I cope well there, even though my paperwork is behind. Home is slowly improving. I am working my way through the rooms of clutter / junk that was Mums. My goal in the next 5 weeks is to try and get my house back.

I can only sort through her things for so long and then I have to take a break. I found photos of my father that I have never seem. My father left when I was young and Mum never forgave him for it. She used us kid in ways that she never should have.

I have never had one photo of my father up until my late 30's. Mums sister have me 5 small pictures of him from her own albums. I had to promise her I would never tell my mother.

So now I find pictures of him amongst the junk. Last week I found the first pictures of him playing with me when I was a toddler. It looked so normal. I just broke down and wept. It is like finding a past you never you knew about.

The weekend before that I came across some old letters and discovered that my fathers mother had had a stillborn baby girl. Apparently this was discussed once only and it was never to be talked about again. Her sons did not know about it. Suddenly so much just suddenly made sense!

You see this grandmother always hated me because I was a girl. She made my life a misery in quite nasty ways. In the last few years before she died we made our own peace with each other, but childhood with her was like I just didn't exist. She was a venomous spiteful old lady.

So the junk sorting continues at a pace I can cope with.

I know I need to stop avoiding 'life' and get organised. I really hope the next 4 weeks help me get on top of things.

O Bed, Delicious Bed!

2007-10-21T05:30:00.000+10:00

O bed! O bed! delicious bed!
That heaven upon earth to the weary head.~
Thomas Hood, Miss Kilmansegg - Her Dream

It has been a week since Mum went into the nursing home. I have been sleeping 10-12 hours a night and having an afternoon nap on weekends as well. I knew I was exhausted but I did not realise the full extent of my tiredness. I can only compare it to when my children were babies, waking up in the night for feeds. But that only lasted a matter of 6-8 weeks, this has lasted a year.

I feel a bit lost now when I am home. It is so long since I have been in the house on my own, or just with my husband. I have not been out anywhere except to work and the movies (with Mum) for the last year. What did I do with free time before I was a carer?

The first day my husband and I were home alone together we both found it very strange. What did we do? We fell asleep in our chairs.

The other thing I have realised is that Mum was a lot worse than I thought. She has needed full time care for a long time and her dementia is progressing rapidly. It is clearer to me now that I am not living with her. I talk to her on the phone each night and she seems to like the place where she is and likes the staff, but she has trouble remembering much or that I have called her the day before.

I am so glad now that she is in care. It is time for me to try and recover my health and my career. I have a heap of medical tests to get done that I have been 'too busy' for and once I stop sleeping so much I want to get back into my work and start enjoying life again.

There is life after caring.

The Carers Alliance

2007-10-15T19:20:00.000+10:00

Well mum is all settled in and seems to be happy where she is. We have been catching up on a lot of sleep and I think it will take us some time to fully recover from the last 12 months of caring. I know that my health has suffered and I am just plain exhausted.

It is carers week here in Australia and a study was released today showing that carers have the "lowest level of well being of any group in society". 56% of carers in Australia suffer from depression, compared to 6% of the general population. They also suffer financial disadvantage as a result of caring responsibilities. This article is definitely worth reading and I am glad that someone is finally putting some money into research. What we need is more money and services for carers, particularly parents with disabled children.

We are also about to have an election here in Australia and a new party, The Carers Alliance, has formed to try and win seats in the senate. You can join the party for free, I have joined, and they will be getting my vote. Take a look at the site to check out the candidates and their policies.

I have worked for many years as a professional carer, yet 12 months of caring has exhausted me mentally, physically, and financially more than all those years put together. Now is the time for me and my family to try and recuperate, rebuild and then move forward with our lives. Not everyone is as fortunate as me to find a placement so quickly.

Mixed Emotions.

2007-10-07T04:51:00.000+10:00

Thanks to Dee for awarding me this Totally Fabulous Award. Dee also pointed me in the direction of a few other Alzheimer's blogs that have been really helpful to me. More about them another day.

It's been really busy preparing for Mum to move. We are all tired exhausted. The whole family is now used to waking up at about 3 am. I get up and start helping mum and cleaning up wet beds and clothes, my family try and go back to sleep. I feel like an automaton most days. I just do things on automatic pilot.

I am so tired I feel like I can't string together two coherent thoughts in a row. I have a mixture of feelings about the move. I am happy that Mum is excited and looking forward to it. I am relieved that she will be safe, loved and well cared for as she becomes more and more dependent.

I am also sad and I will miss her. For a year now it has been like 'me & my shadow'. At times this is very frustrating but I know I will miss her. being here. I am also looking forward to being able to go and walk my dog, or visit friends or use the treadmill again. All things I have not been able to do while Mum live with me. I want to have time for myself again. I feel like life has stood still for me.

I want to sleep past 3-4 am again! I won't miss the huge amounts of washing that incontinence creates. I will miss the constant talking, even though it drives me nuts some days. I will miss the little jokes that Mum makes, even though I hear them over and over and each time I laugh as if I never heard it before.

I will miss drying Mums hair each day after a shower. Every day she laughs and says " you dry it just like mum used to!" in complete amazement. I will miss being introduced to the workers at the Day Care Centre whenever I do to pick Mum up. " Have you met my daughter?" Every time.

I am looking forward to having time for my family again. I could not have done this without them but it certainly has had an affect on us. This has dominated our conversations, our finances, our plans and our relationship for too long now.

So I am a mixture of very tired thoughts and emotions just now. When I read other carers blogs I just cry at the moment. But I am OK and I know I am doing the right thing for both Mum and I. The tears are bittersweet.

Moving on.

2007-09-27T02:53:00.000+10:00

Well things are moving very fast. Yesterday I was contacted by one of the places I applied to and offered a place for mum. I was really surprised when I got the phone call. In the area that we live in it is quite common to wait 12-18 months for a bed.

Mum will be moving back to her old childhood town, about 4 hours away. She is really excited. When I told her she asked if we could by her some sunburn cream so she can go to the beach when she gets there. We are going down to look at it on Saturday and then if all is good, which I expect it will be, we will take it.

The following week she is due to have surgery so I will go and collect her and then take her back. She will be about 2.5 hours from that hospital. So it will be a huge round trip for me. We were at he doctors yesterday and the next week is a flurry of appointments, tests, and paperwork in order to get everything done on time.

I am so pleased that mum is happy and excited by this. It would be very difficult if she did not want to go. Her sister is also excited at having her so close. So hopefully this works out for everyone. It is also strange to think of mum not being here.

Back to Hospital next week.

2007-09-26T05:38:00.000+10:00

Mum has to go back to hospital next week for a minor procedure. Minor for her, major for me! Even though it is only day surgery we need to go down the night before as the hospital is 4 hours away.

I am so fortunate to have such a great workplace as I need to ask for time off again. I have taken almost 3 months off work over the past 9 months to care for mum and yet they still keep my job open for me. I am so very grateful for a good and understanding boss.

So yesterday was spent making phone calls, cancelling all the my clients and arranging pre-admission tests. I am glad that we are going to get it over with but I am really tired of it all. Two days ago I managed to sleep in till 5 am, it was just heavenly!

Mum is up at 2-3 am every day no matter what I try to change it. By mid afternoon at work I am exhausted. That's the latest & longest I have slept since October last year.

I am glad to have this blog so I can vent a bit, but also I want to give a true picture of what it's like to care for a parent with dementia in your own home. There are some very magic moments that I so glad I have had with mum, but it's not all beer and skittles!

I feel better for having made my decision to place mum in care. I have put in applications to six homes and I am waiting to hear back. I know that I could be waiting quite a while.

"When I die I'm going to sit on a cloud all day & paint!"

2007-09-22T18:02:00.000+10:00

Thats what my mum used to tell me growing up. She loved all things artistic.

Finding activities that keep mum occupied but not overwhelmed can be a challenge. We stumbled upon something new yesterday when I was cutting up some leaflets for work.

Mum now has a pile of old magazines and is cutting out pictures. She seems to be really enjoying it and I gave her a couple of folders to keep them in. She has spent hours cutting, putting them in folders, taking them out and doing it all over again. There are pictures and paper cuttings everywhere but she is really happy with what she is doing so I don't care about the mess.

Mum used to do a lot of art, so anything that is creative is an interest to her. I am used to it now but last year I got a real shock to see her struggle to draw a picture with the right perspective. Her drawings now are like that of a pre-school child. She does drawings at day care and brings them home for me to put on display. I feel like I used to when my children's drawings were proudly brought home to me when they were little.

There were so may art supplies when I cleaned out the house. She had saved her money and bought quality paper, pastels, oils, brushes and other supplies for when she retired. And although she did paint and draw over the years she never got to use all those supplies and now it is too late.

It is sad to see her lose such a wonderful skill. My home is filled with her paintings and sketches. Two of her paintings hang in my office. It has reminded me not to put off everything for when I retire. I need to do those things now.

The Long Goodbye.

2007-09-21T04:37:00.000+10:00

Thanks for the messages of support, they do help me to not feel so alone in all this. The last few weeks have been very difficult. I think I needed to have a 'mini-meltdown'... I have just been keeping it together for so long now that something had to give.

Being sick and unable to do anything was the final straw. Without me to take care of mum, this is just too hard. It showed me just how much I actually do for mum, and what that is costing my family.

I have finally had a good cry about a lot of things and I am sure there are more tears in store.The truth is that my mother is dying a little bit each day and I can't do a damned thing to stop it. My 'real' mum is gone, there are only glimpses of her now.

I have done a lot of thinking over the last couple of weeks and come to the decision that I need to place mum in care. This has not been easy believe me. My health and family are suffering. I have never had as many stress related health problems as I have in the last year. My doctor keeps telling me I have to take better care of myself or I will become ill.

I think back to the mum I knew, and I know she would not want this for me, or for my family. You see my mum never had a happy marriage. We did not have the safe and loving family life that my husband and I have created for our children.

If I could go back and talk to my 'real' mum I do know what she would want for me. And it is not this. She would be devastated to think that she was having this effect on me and my life. My 'real' mum was so proud of my study and my career. I was the first person in my family to finish high school. Mum always told me to " Dream big!" and then go out and make it happen. I think that she wanted me to achieve things that she never had the opportunity to do.

If I could talk to my 'real' mum right now and get her advice, she would tell me to make sure that she was clean and well dressed, and looked after properly and then go and get on with my life.

She would tell me to do back to university, work hard and make a difference in the world, that God gave a talent and I have a responsibility to use it. She would tell me to go out and achieve my 'big dream' and don't let anything stop me, even her growing old and frail. "We all have to die sometime!"she would say.

Mum believed in my work, and she beamed with pride at my every achievement for my whole life. You see for her generation of women there were limited choices. She used to to tell me that she was a quiet and timid person, a follower not a leader. That as a mother, she had always tried to encourage me to believe women could do anything, even though she herself had struggled. She has always been a very dependent, passive person, but she still always pushed me to succeed.

That is the mother I grieve for, that is who I miss. I want to remember and savour all those old conversations we used to have, the good and the bad. I need to remember the person my mum was before this horrible disease started ravaging her mind, stealing it away and changing her into a needy, sometimes petulant child.

In the last few weeks I let myself go back and remember her and I had those conversations with her in my mind. I asked what to do and then I listened.....How I wish I could have those talks in real life....

Now that I have my answers I have made arrangements for the aged care assessments and papers. I have contacted the homes and got application forms. I talked with mum about her moving back to the town she grew up in so she can be near her sister and her old friends. She was very happy with that idea. So we both cried then.

You see it kind of keeps hitting you, out of the blue, all over again that we have limited time together to stay our goodbyes. So many things that we do I later realise that it was 'the last time' we will ever do that together. I just didn't know it when I was doing it. A couple of months ago I took mum for trip to see the house she lived in a a child and I took her photo in front it it. It was the last time she will go there.....

This is what I have been avoiding feeling, the long goodbye of dementia. But I am glad that she understood when I spoke to her about moving into a home. I know that I have made the right decision for all of us. I know that my 'real' mum would be OK with this. In fact she would be pushing me to get on with it, and bragging about me to her friends.

It's OK mum, I can hear you again now...

Feel like I just can't cope tonight.

2007-09-09T01:03:00.000+10:00

It is 1 am and I can't sleep. I am tired, but I just feel so down tonight. My hubby and kids have all told me at different times in the last 2 weeks that this doesn't feel like their home anymore and it is just cutting me up inside.

I am so tired of trying to keep everyone pacified. I want my old life back, the busy messy, comfy old life that we had before this all happened.

I am on a runaway train that I didn't even buy a ticket for. It's the most expensive ride I've ever been taken on. I've lost my business, many thousands of dollars, my health. I failed to graduate from 2 university degrees. I had to withdraw from the higher degree I was about to commence 18 months ago. We are now trying to live on 1/3 the income we had 2 years ago.

We all try and cope by escaping, so none of us spends that much time together any more. I miss my family. My mother and daughter can't stand each other. Try and choose sides between your mother and daughter, it rips your heart out I can tell you!

I look around me and all I see is all the junk that I lived with growing up. I hate it. Everyone comes to me with all their problems. Who do I go to? I can lean on my husband to an extent, but I don't want to be always whingeing to him. Being sick for the last few weeks has made it worse. He has had to care for me and also for mum and run the house completely. I want to be his partner, not his burden.

My siblings are horrible people. No support, only criticism. In fact worse than criticism. Much worse. I have nothing to do with them and never will.

I need to just have a rant and get it off my chest. Hubby is sick of hearing about it. thank god for blogging! I am going to try and get a couple of hours sleep on the lounge. Does anyone else out there just want to walk out the door and not come back sometimes?

On the mend.

2007-09-04T07:08:00.000+10:00

I an feeling a bit better now than I was but still not quite right. This morning I made a big effort to look very healthy and convinced mum to go back to daycare. I got dressed and myhusband promised her he would stay home and take care of me.

Well she has gone and I am back in bed in my pyjamas. Hubby has left for the day and I can now have some peace and quiet!

This has made me realise how vulnerable I am as a carer. There is no back up if I can't do it. I do not have any family support except my dear husband. There is emergency respite care and nurses but that is a last resort. Friends offer to help but there is little that they can really do.

It just is a reminder that our lives are on an unalterable course with her illness. Mum will continue to deteriorate and need more and more care. Eventually the time will come when she will need full time care in a nursing home.

I would like to just have my life back. My busy, disorganised but wonderful life! But it will never be the same again. I can't pretend it will anymore.

Oh well I am going to stop before I become miserable. Time for a cuppa in bed and good book!