Wednesday, December 26, 2007

First Christmas went well.

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.

Friday, December 14, 2007

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.

Sunday, October 21, 2007

O Bed, Delicious Bed!

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.

Monday, October 15, 2007

The Carers Alliance

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.

Sunday, October 7, 2007

Mixed Emotions.

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.

Thursday, September 27, 2007

Moving on.

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.

Wednesday, September 26, 2007

Back to Hospital next week.

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.

Saturday, September 22, 2007

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

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.

Friday, September 21, 2007

The Long Goodbye.

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...

Sunday, September 9, 2007

Feel like I just can't cope tonight.

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?

Tuesday, September 4, 2007

On the mend.

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!

Friday, August 31, 2007

The Sick Bed.

I have been unwell for a few days and need to rest and not do much. Mum has refused to go to day care, she wants to take care of me. All she can do safely is get me a glass of water, if there is a glass left out on the cupboard. Of course she wants to sit next to me all the time and doesn't think that anyone else is doing enough. Then she tries to help with things and gets in the way.

So we are all trying to be patient and some times it's not easy.

Today I gave her a whole bunch of papers and got her to hold them for me, she was pleased with that. I need to give her things to do to feel useful when quite frankly I just want to go to bed and be left alone by everyone!

In her mind she is my mother and it is her job to take care of me when I am sick. This will be an exercise in patience for me!

Tuesday, August 28, 2007

Keeping up appearances!

Mum has lately been paying a great deal of attention to her fingernails. She wanted some nail polish so she chose a bright pink colour and now she paints her nails twice a day!

In the morning after she is dressed and waiting to go she sits and paints them. She takes the bottle of nail polish with her to day care and apparently puts more polish on there. In the evening she will either add another coat or sit and pick it off. When she allows it, we remove it and let her start over.

My husband was surprised by all this recent attention she is giving to her nails as he has never known her to be like this. When I was a kid she was very fastidious about having her hair and nails done. They were always beautifully manicured and she went to the hairdressers every week for a set. I used to love to sit and watch them tease her hair up into a beehive (the 60's!). They would add hairpieces and incredible amounts of hairspray to keep it all together. Then every night she would wrap her hairdo in a silk scarf to try and make it last.

I guess that's where she is this week, back in the days of caring about her looks and taking pride in her appearance. Much like the mum I grew up with. I am enjoying her latest pastime, it is harmless and she is happy.

Sunday, August 19, 2007

Carer Isolation.

Mr Mans Wife has written a very thoughtful post: Solidarity, about the isolation of carers and the serious lack of carer blogs in the blogosphere. As a very new blogger I am always on the lookout for other carer blogs. So please leave me a comment if you have a blog so I can find you. For me reading about carers ups and downs helps me feel like I am not so alone.

The latest statistics for Australian carers are from 2003. At that time 13% of the population identified as being carers. Over 75% of carers are still in the workforce. In total 54% of carers are women, but in the 25-65 age group, women carers far outweigh men. For employed carers, most are part-time with difficulty arranging alternative care and work hours identified as the main barriers to employment.

The physical and emotional effects of caring include: feels satisfied, feels worried or depressed, stress related illness, weary or lacks energy, well being affected, angry or resentful. The survey reports that over 72% report one of more of these effects. Unfortunately they do not give the breakdown for each effect which would be much more useful information.

One quarter of carers report losing contact with friends, and 14% feel they spend less time with other family members as a result of caring responsibilities.

For me caring has completely changed my life, and not really for the better. It has cost me thousands of dollars, caused a large amount of stress and worry. I have been diagnosed with 2 stress related illness' in the last 8 months. It has caused family conflict, less contact with friends, loss of freedom to pursue my own interests. I have had to close my business which was a goal I had worked toward for many years. My income is almost halved now.

On the up side I get to spend time with my mum, to care for her, to have magic moments that I wouldn't want to miss with her. I suppose what I am saying is that being a carer changes your life. Not always in ways that are positive, and then in unexpected ways that are wonderful. It is a complicated business this caring. I personally have found that only other carers understand the roller coaster of emotions and the frequent internal conflict I experience.

Wednesday, August 15, 2007

Silence is golden!

I had a lovely day to myself. No radio, no TV, just silence and the sounds of birds in my garden.

Mum went to day care, my children were away and my husband was away for the day. I left breakfast until mum had left. I found a lovely sunny spot outside and just sat and ate leisurely while I started reading a book. I just wanted to soak it all up! Later I came inside and felt good enough to tackle some difficult phone calls I needed to make. I had been putting them off because I just didn't feel up to it but they went well.

I had some boxes of mums stuff stored in my bedroom so I sorted through them and gave my bedroom a good clean. It feels like it is mine again finally! Having mums belongings all through the house has had a strange effect. Last week when my husband told me it didn't feel like our house anymore I realised I had to reclaim our space, for our sake.

I made a really nice lunch for myself, instead of grabbing something on the run. Some chicken breast and salad. The quiet in the house was just so soothing! Really calming. No rushing and bustling.In the afternoon I read some more, and then cleaned out a couple more boxes of papers.

I have rearranged and reduced my work and now I will have at least one day at home each week, sometimes two. My daughter and husband were amazed at how much I had done when they got home and all agreed the bedroom feels like ours again. I think if I can get some time to myself each week it is going to really help me feel less stressed.

Monday, August 13, 2007

At Last! A day to myself!

Today is the first full day that I will have at home alone in the house in the last 10 months! I am so looking forward to it. One part of me wants to just sit down in the sun in the quiet and do nothing at all. Another part of me wants to get stuck into all the work that needs to be here to sort out the mess we are living in. Another part of me would like to have a good cry.

I am the type of person who needs time alone. I realised many years ago that for me to have any semblance of inner peace I needed to spend time in silence with myself. For most of my parenting life the early hours before dawn were mine. No noise but the sounds of the birds waking, time to meditate, reflect, draw, breathe. My time.

Since mum came to live with us that time is gone. She too is an early riser. Once she hears me up she is up out of bed. Some days she is out before me, sitting in her armchair in the dark. I miss My Time terribly! Somehow I have to get is back in a different way or I fear I will just be overwhelmed by all this. So today is the first day I have to myself. I can't wait to get them all out of the house!

It is time for me to accept that I have to do things differently. Find new ways to care for myself. How do other carers do it? I would love to hear how you manage to take time out.

Thursday, August 9, 2007

All dressed up...

Mums ability to dress herself is variable. Some days she gets herself dressed and looks fine, on the outside. There may be missing garments underneath or too many layers. Some days she just is overwhelmed with even seeing her clothes laid out on the bed and can't even get started. She is nearly in tears with the choices.

Yesterday mum surprised me by walking out of her room fully dressed in her best clothes, hair, makeup, and jewellery with no help from me at all! It gave me a funny feeling to be truthful, she just looked like her old self, not like the little old confused lady I have been living with. Moments like that kind of stun me out of the blue.

It is winter here and she was dressed in summer clothes. After telling her how lovely she looked and removing the hairbrush tucked in the front of her bra I asked if she would like to wear something warmer?

Absolutely not!

No way could I coax her!

A coat or jacket perhaps?

Not interested one bit!

So off she went to day care looking resplendent in her summer clothes and bejewelled for an evening occasion! She insisted on taking her toiletry bag with her, the colours match her outfit.

There is not point trying to convince her that she needs to change her clothes, she was so happy with herself and the wonderful staff at the day care centre will find her a warm blanket, admire the toiletry bag and the dripping evening jewels and surround her with love and attention.

I could hug everyone of them! They are my lifesavers.

So mum had a wonderful day, got lots of compliments and came home very happy with herself. I have no idea what she thinks she had to dress up for but it was a joy to see her yesterday.

I love days like that...

Wednesday, August 8, 2007

Carer Dementia!

I think I have carer dementia! Yesterday I put the electric kettle on the gas stove to boil and melted the rubber base of the kettle. You can imagine the smell and smoke that it created!

My mind is tired and I just can't seem to remember everything like I used to. I was up at 2am because I woke up worrying about everthing that needs to be done. I just found out I forgot to pay some important bills. I need to make lists to keep track of it all, there is mums financial and health bills and paperwork as well as our own. No one seems to understand just how swamped I am with the backlog of 'things' that I need to do both at home and at work.

My mother was a copious list maker. For as long as I can remember she used to write lists and reminders. As she slipped into dementia she must have tried desperately to keep hold of the thoughts as they came into her head. When I cleaned her house I found hundreds of notes, there were 17 calendars attached to the fridge alone and more in other rooms. There were notes in stuck in her car reminding her to turn off the lights, drive at 50k, check oil etc. She had taken some white out and marked the 50k on the speedo.

When I do silly things like I did with the kettle I wonder is it just that I am so tired?... or is this the start? When I feel overwhelmed by the paperwork trail and forget important bills I never know if it is 'normal' or not. And nobody wants to talk about it... they want to say "don't be silly", "you're just tired"... or "you've been through a lot lately".... that's what I used to say to my mother when she had the same concerns.

I don't think it is an unreasonable concern given a mother and grandmother with early onset Alzheimer's.
Does anyone else out there worry they may be next in line for this horrible disease?

Sunday, August 5, 2007


Well all in all I have made some progress on cleaning up and sorting through stuff. Mum has spent a lot of the day resting in her room and that has made the job a lot easier. She gets quite confused and a little anxious when we move furniture to vacuum or change things in the house.

I think she also wants to help me but just can't do much. I give her little jobs when I can like folding the linen. But mostly she gets overwhelmed by anything but the most simple task. Once she just insisted on ironing and it was quiet funny. She ironed the same pair of pants for almost an hour! But she was very happy so I just let her do it.

Her main 'chore' is to peel the vegetables. She enjoys doing this and is very methodical and thorough with it. She can manage that so long as we always set up the vegetables and peeler, etc in the same order.

I remember when I worked in a wonderful dementia unit. Each day the laundress would drop off a few baskets of tea towels and face washers for several ladies to fold. Then in the afternoons there were a couple of ladies who would peel a few vegetable for the cook. They were slow but they loved to contribute and would enjoy each others company while they worked.

Simple satisfactions are the best we can hope for now. Simple pleasure snatched amidst the frustrations and losses that become more apparent as each day passes.

Today was a good day for all of us.

Saturday, August 4, 2007

My Mum the Pack rat!

Mum has always been a hoarder. She used to keep absolutely everything just in case it might be useful. Bottle tops, buttons, newspapers, takeaway food containers. When I cleaned her little 2 bedroom we took 2 tonnes to the tip and had 3 skip bins of rubbish taken away.

What was left came to our house because we simply ran out of time to get through it. So my once clean house now resembles her old junk filled house and I hate it. My house no longer feels like my home. My husband told me this week that it doesn't feel like his home anymore, it feels like my mothers house. We built our home almost 20 years ago and raised our kids here. It's not perfect but up until mum moved in it has had a good feel to it. It gets a bit messy at times but it is a friendly, warm house.

My daughter has started seeing a counsellor to help her cope with mum living with us. I am considering it as well, if I can find one that I haven't worked with or don't know. Somehow I have to try and get rid of all the remaining junk and reclaim my house. I can't just throw things out because Mum has valuable things hidden with rubbish. I found almost $700 in a box kitchen junk.

So this weekend I am trying to have a big effort to sort through more boxes. One of the problems is that I can only do it for so long and then I just feel overwhelmed. I have found photos of my father that I have never seen. Or mementos of him that I never knew about. He left my mother when I was young and although we saw him sometimes at holidays mum never shared any memories or photos of him with me.

So I will be cleaning something and then suddenly I discover pictures or letters. It is like a kick in the guts. I sit and look at them and I wonder about all that I don't know about my childhood. What hurts most is when I show my daughter, and she has seen them before. Apparently mum showed her when she was younger.

And they are not all kept together in one place. A photo or a letter will turn up anywhere, or a memory. It exhausts me.

So Mum was a pack rat and as her dementia progressed she became worse. Now she takes things and hides them in her room from our belongings. I can cope with it but my daughter can't.

Oh well, blogging is such good therapy. Where else can one share this stuff anonymously. So I am trying to brace myself to get a lot done today. I will set Mum up with a video so she is occupied and doesn't try to 'help' me. I have a Fred Astaire one that she loves.

So my goal this weekend is to reclaim some territory!

Monday, July 30, 2007

Dependent Personality

It's been an interesting few days....

I have been sick and so I can't do what I usually do for mum... she has been wanting to help me which is lovely but she just can't do things.. it took me 10 mins to talk her through getting a bowl of weetbix..

walk straight ahead towards the cupboard... now put your right arm out....

no.. the other one....... yes

now hold it up.... not that high!.... that's better...

put your hand on the door handle...... yes that's the handle... no don't turn it... pull it!

good! now put your right hand...... yes that one........ up and get a bowl....

no mum that's a plate..... yes put it back..... all right just leave it on the bench....

now turn around.. good ... put your hand in...... pick up a bowl.... good! that's it..

OK ,.. turn around and face me.... yes bring the bowl.... no Don't leave it on the bench! ..

yes ..... that's it pick up the bowl walk towards me. Great!!

now put you hand out ..

But I won't go on. We went through getting the packet of weetbix out, putting 2 in the bowl, adding milk and microwaving it. I was exhausted, mum was really pleased with herself for 'helping' me So now mum doesn't feel like everyone is doing enough to help me, she is annoyed with my fabulous hubby and kids and scowls, makes disapproving noises and generally is awful to be around...

On one of the days she was swearing at my daughter under her breath, I was so angry! and so frustrated with her! It is like having a naughty 4-5 year old who is jealous of anyone else who comes between them and their mother.

The problem is this is old behaviour... my mother used to try and come between me and friends when I was young... her Dr, who was training to be a psychiatrist at the time, told me this when I was in my early 20's: " You have 3 children, 2 of whom will grow up. The third child is your mother. She is a dependent needy person who will always need someone to look after her. You need to leave, stop taking care of her and get on with your own life, or she will ruin yours. She will be OK. Once you stop taking care of her she will just find someone else to do it. She has a dependent personality disorder."

I can hear those words like it was yesterday,even though it was nearly 20 years ago. That Dr helped alleviate my guilt that I could not make my mother happy, that I could not give her what it was she needed, no-one could

And here I am .

And here she is.

Where will we go from here? She might be really lovely tomorrow. Lets hope so...

Sunday, July 22, 2007

Judge not...

In my first post I mentioned being judged for my decision to be a carer. I think that there is a lot of judgement around this issue.... everybody, it seems, is suddenly an expert on what it the 'best' solution!

it really pisses me off that people who hardly know me suddenly seem to think i am incapable of making decisions when it comes to my and mum.....

I really believe that there is no one best solution... and i have experienced this on many different levels over the years..... as a health professional... an administrator.... a grief & bereavement specialist and as a carer......

we need to let families decide and support them in their decisions....

if you want to see just how emotive and how judgemental the issues of carers can be take a look at this article and the responses it received.....

.....sending a hug to all the other carers reading this....


Saturday, July 21, 2007

Happy memories

In the mornings mum gets up early and sits in her chair, reading or knitting while i do chores, read emails and generally tidy up.

The mornings have always been my time to myself, the time i needed to stay sane and start the day with a little bit of piece before children woke up and the daily rush of getting kids off to school and myself off to work began.

since mum moved in i have lost that time to myself and initailly i resented it... i wondered how i would manage without my quiet start to the day...somtimes i still do...

today mum is like she is about 7 years old.... she has not stopped talking, except to take a breath for the last 2 hours....and she shows no sign of slowing down....these are the funny moments we share...

she has told me of when she won the tunnellball competition, of the awful girl who stole her sword jusst before she was about to go on stage and do the sword dance, of sharing sanwiches in the playground, of sunday school singing... non stop happy memories pouring out of her with lots of laughter and giggles..... i really don't think it even matters if i am listening or not!..

I have made her stop and have her cup of tea... and she is about to start again ' when we went to the place where everyone sits...... we played the thing with the ball.... " then she laughs and smiles....

days like this are precious..... today she is happy in a world of friends and playgound fun...
today i am grateful we share our mornings together...


Thursday, July 19, 2007

laughter is the best medicine!

I feel a lot better than yesterday. By last night I felt quite down... I found myself thinking about all the losses that have happened since mum got sick.... a job... a degree... thousands of dollars.... my freedom...

But I woke up today feeling a lot more positive.... I think it is just part of the ups and downs of adjusting to being a carer...

Mum went back to day care today...she was excited to go and everyone was pleased to see her after her being away sick for a couple of weeks...I came home and enjoyed having the house to myself for a few hours.... in the afternoon I slept for 3 hours!

I knew I was tired but I didn't realise how tired....

I need to start concentrating on regaining my health now.... I have gained weight, my skin is crappy and I have not been eating properly for a while now.... so starting tomorrow I will be making small steps towards a more healthier lifestyle...

mum was in a happy mood today... she was chuckling at everything this morning..... it was lovely... I gave her Michael Crawford's book and asked her to read to me.... she loves to read out loud and she has improved with her concentration and speech since starting the aricept...

so she read funny little anecdotes from the book and then she got the giggles and couldn't stop laughing at his description of losing his woollen swimming trunks in the pool!.. bare white bum bobbing about in the pool looking for his swimming trunks!

I love moments like that.... I wish I could capture them..... just joy and contentment ... in the moment..... priceless...... she wants to write Michael Crawford a letter now and tell him how funny he is.... who knows we just might do it....

I loved seeing her like that.... laughing and happy.... today was a good day for us both...


Wednesday, July 18, 2007

Today is a difficult day.

Mum has been sick and we are all tired and in need of good sleep. Yesterday she was so childlike and so glad to see me. I could see it in her eyes. Sometimes her eyes are those of a frightened 3-4 year old.... and just like a child the only comfort is stay close to mum, which at the moment is me.

sometimes I want my mother as well, the one I grew up with, the one who used to tuck me in every night with a kiss on the forehead.... but those days are gone... I still feel that love some days..... the love my mother had for me through all those hard years....

today I feel exhausted and sad as I watch my mother/my child sleeping in the armchair, wrapped up in warm, soft pink gowns and rugs....soft gray hair

who is she today?...

who will she be when she wakes?

what will tomorrow bring?


Sunday, July 15, 2007


Hello and welcome to my online diary...

My mother has early onset Alzheimer's Disease and she lives with me and my family. I am her carer. I have worked in health for many years including working in Dementia Units. Now I am like any other daughter caring for her mum. I am my mothers mother.

Recently I made the decision to stop working full-time and reduce my hours to 20 a week. The strain of caring is taking it's toll. I have reached a point where I want to simplify my life and enjoy the time we have left together.

Mums diagnosis has turned my life upside down. So many plans that I had are now not possible. The future I imagined is gone. I have so many different feelings about this experience. Although caring was thrust upon me, now I have chosen to be a carer. There is a difference.

As I enter this next stage of my life I have decided to keep an online diary. I have often found the process of writing to be therapeutic. I would also like to connect with others who have chosen caring and who can respect my choice, not judge it.

I welcome you to my diary...

the diary of a carer...