Sunday, December 14, 2008

It's time to resume this blog...

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.

Tuesday, February 12, 2008

4 Months since Nursing Home Placement

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.