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!