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Written by suew 24. Aug 2007 06:38 PM

I just had a visit from a dementia worker. She came to me via a referral from the rehab unit Ray was in after the fall which gave him the fractured pelvis and cracked hip socket. The group have an outreach team aimed at post-stroke not post-injury so maybe they thought referring me to a dementia worker would at least fix one of our many problems.

As most workers do she came with the best of intentions. But after she listened to my story of caring for Mum and now for Ray she admitted I probably knew as much about the management of the disease as she does. She was pleased I had joined dementia support groups on and off line and that I was seeking to educate myself as much as possible about the disease and how to care for a person with the disease.

There really is not a lot a worker can do. The funding is so low that the five hours I get now plus Daycare on Mondays is probably all I will get. Having the worker's phone number is reassuring if I ever need someone to come out and discuss further options.

I will need to explore other options as the disease progresses. Already we are at the stage where something Ray could do quite easily last week he can no longer do this week. The gaps are widening and the good information is falling into that No Man's Land known as "the areas of white matter" that we see on the MRIs.

I wish I had a magic wand and could wind back time or at least make it stand still but I can't do that. And so the disease will progress, Ray will gradually lose his abilities and his personality and only my memory and those of a few close friends will hold all those precious thoughts about what made him the lovable person we knew. It is sad but it is the way life is.

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Comments from the community:

Hi Sue
After reading your entry I guess I realised that I am lucky in some ways because with the care agency that I am through for mum we are entitled for up to 25 hours a week with carers as she progresses. At the moment we get 11 1/2 hours and that will soon increase to 14 1/2hours.
It sounded like it was good for you to talk to this lady but I was pleased to see that she acknowledged your experience with this condition through all the years of caring you have done.
I find it sad with mum that people who come into our life now cannot know who for who she really was. I try to introduce them to the person she was through my memories. I have also been doing some quiet educating of my students in dementia for their future reference and they are great and listen intently to what life can be like for me and they ask a lot of questions. I hope that I can pass on a little bit of wisdom to the next generation of carers.It can't hurt.

Written by leslie, 27. Aug 2007 06:57 AM

Leslie, it is probably because you are classified as a Working Carer that you get as much in home care as you do. I talked to the care provider this morning as I want to do a course of some kind next year and will need more hours. She said even for study and training purposes extra respite care is hard to get here on the coast.

But I won't give up exploring options,as Ray's care needs increase. I know the only way to keep him with me is to make sure I can take the breaks available and have some time away from him. As you know caring for someone over a 24 hour period, seven days a week is too hard, and even five hours off twice a week can make a lot of difference to how life feels for me.

Written by suew, 13. Sep 2007 05:32 PM

Hi suew, just read your comment and it prompted me to ask how much respite care you are entitled to where you are from. I get 9 weeks a year with mum (although I am only using for the first time next month).

I also get 2 hours a day home care (an hour in the morning and an hour at lunctime) plus 1 extra hour on Tuesdays for them to clean Mum's area. I really could not do it without their assistance. My mum has lost all speech and is confined to a bed and water chair. She is on the EACH Package plus dementia which also supplies everything I need for her. They have supplied a hospital bed, a water chair, a shower chair, all kylies and plastic sheeting for the bed, a pressure matress, her PEG feed (of which she has five a day), her syringes and even her nappies. It costs me $44 a week and it is marvellous!

I couldn't praise them enough. I would have had to put mum into a nursing home long ago if not for them. I am hoping that I will never have to put mum into a nursing home as she would not be happy.

Mum lost her personality and memories of me long ago but now and then she seems to remember who I am and if I ask her she nods yes. Most of the time she does know me from the fact that I am always there and she trusts me but does not know who I actually am other than a carer. It is sad but is definitely not thankless in that every time she smiles or even just watching her sleep and knowing she is having a good sleep is so wonderful, that is the thanks. Anyway chin up and good luck with the future.

Heather

Written by HCroft, 17. Sep 2007 12:24 PM

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