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!