Thursday, January 22, 2009

thanks and ((hugs)) to my fellow bloggers

...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


Robert said...

Imho you've got the right attitude. When your mum eventually passes away, you grief will be tempered by the knowledge that you did all you could for her in the last phase of her life. I'm glad thta you got some "you" time on your holiday.

Best wishes.

Carol said...

Your blog has been a godsend to me, as I am rather early still, in my mom's journey with this horrible affliction--right now we are unsure as to what her living situation will need to be next week, as she has been in a rehab facility temporarily, due to some severe confusion...reading your blog and others like it helps me remember that I'm not alone...

Anonymous said...

I too am a carer for my 90 year old Grandad my Nan passed away 2 years ago and he didn't want to leave his home he had shared with her for 50 years so I moved in with him so he could have all his things around him after losing his wife of 50 years. I rented my house out moved my family 250 miles away just so he could live the rest of his life around the things he loved as he didn't want to move in with me nor go in a care home. 2 years have passed by and I am just so depressed all the time. I can't leave him for long or if I need to go away for even a day I need to arrange so much. I have got myself into a mess and can't get out. we don't have any of our things around us I can't work as grandad needs consent care and I have no friends here. I have loss my happy smile and fun side. I agrue alot with my husband. This isn't my home I thought I was doing a good deed for my dear grandad but now I just want to run far far away but can't everyone NEEDS me. I cry all the time but not in front of anyone I hide my feelings from everyone as they might think I am a failure. I need some to talk to who is going through the same thing please.

elanor said...

hi robert, I suppose it's a matter of just doing what feels right and what I can live with, the 'me' time was great 1

hi Carol :) so glad that you stopped by, sorry to hear about your mum, I hope her confusions settles soon, I found reading other carers blogs helped me so much, especially with the feelings of loneliness,

hi anon, you are in a really tough situation ((hugs)), it sounds like you are exhausted from caring, I remember nights when I just sat and cried, and then I put on my 'happy' face in the day time, I can't put into words how unhappy I was feeling and how torn between what my mum needed and what I and my family needed. I wish I could ask you over for a cuppa and a chat.

If you want to you could email me at (the name of this blog) AT Hotmail dot com,

do you have access to any free counseling in your area? some carers associations provide it ( they do in australia) or a local health centre?
Maybe the cost of caring is now becoming too great, it sounds like it's affecting your health and your family like it did for me, in the end thats what forced me into my decision. I just knew that if I kept going I risked getting really sick and also that my family felt more and more distant.

You are doing an amazing job and what a wonderful gift you have given your grandfather these last two years!
Is there any home help or day care you can get? That might be a help so that you can get some time to yourself to start to think things through and decide what you want to to do. I hope you stop by and read this, please email me ((hugs))

Greg said...

I'm sure it will give you so much comfort in years to come to know that you were able to bring your Mum some delight even in the midst of and despite her illness. It's lovely that you made this effort and I think it's just as important for your persisting memories as for her transitory ones.

It's curious with my Mum: if I let the staff know that I'm going to visit and they tell her, Mum bores the pants off everyone who'll listen about her "marvelous Son" (her praise for me is excruciating to listen to, since I never merited it in such an effulgent fashion before her illness - how can I possibly live up to it?). However, in our conversations, she often says things to me that suggest that she sees me as her Husband (my adoptive Father), which might account for some of her enthusiasm. Other times she asks about relatives (sometimes deceased) as if we are all living together in one big old house and I am the representative for the extended family.

I recognise the post-lunch exhaustion you describe. Over the past year I've had to curtail my ambitions as far as outings are concerned. Mum couldn't manage a trip to the local zoo, or a walk in the country - she'd be tired and she, frankly, doesn't seem to see any value. She mostly wants to be taken somewhere to eat a meal, and I'm afraid I've even stopped doing that since she's developed a problem with incontinence. My visits all start off enthusiastic (I turned up with doughnuts for everyone in the household last time) but it's very dispiriting to have the same, limited, conversation each time and I'm quickly at a loss for what to do or say. I don't feel that "marvelous" in actual fact. Still, she seems to be happy and is surrounded by activity all day, which she watches avidly like a soap opera. If I take her to her room and sit with her, I soon see her itching to get back to the Lounge to see what's going on.

I know what you mean about people who try to close the conversation down with an optimistic remark. Yes, it's well-meaning, but it can feel a bit crass in the way it appears to discount the very real ongoing situation and the huge consuming passions we're experiencing day to day. It sounds like you see blogging about it the same way I do, and I'm glad you have the outlet. I'm glad for your sake and for mine, because it's helpful to know I'm not alone in feeling some of these things.


elanor said...

hi greg,

yes you are right about the visits, I find that the time I can take mum out is getting shorter due to the incontinence and the tiredness. I did take her to the picture theatre last time to see a childrens cartoon and she really loved it.

I find that I go out armed with incontinence products, a change of clothes and we make hourly trips to the bathroom... it's going to get increasingly difficult to take her out for more than a few hours soon.

citygirl said...

I absolutely despise when people try to "jolly things up" or try to help you look on the bright side. It didn't occur to me that they might be uncomfortable with grief or sadness...I just thought they were twits! You've helped me understand these people a bit better now...thank you....maybe I won't be as hard on them anymore.

I really enjoy reading your blog where you freely talk about your feelings (as I do on my blog).

citygirl said... more little bit. Greg absolutely cracks me up with his stories somedays. The "marvelous son" and "the representative for the extended family". Greg, you make me smile :) citygirl