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not coping as well

A page in the diary "Sue's thoughts on life"
Written by suew Thursday, 8 October 2009 16:28

Yesterday I had a crying spell. I am not the crying type and it rarely happens. I think when it does it is a sign that I am over-tired, overwhelmed and not coping with whatever the current frustrations are.

I am having some trouble dealing with the latest effects of Ray's dementia. To have dementia on top of the stroke deficits is just too cruel. To see him sitting staring into space, nothing registering around him is so upsetting. He doesn't do it all the time but it does happen more frequently now.

I have never believed people with dementia are "happy in their own little world", I think they are lost and confused and often unhappy as their world changes into something they no longer recognise. I watched Mum doing that, looking around with a puzzled look on her face as if she didn't know where she was. The place she always wanted to be was at home with my Dad looking after her and all hope of that died when he died in January 2000.

Ray shouted at me yesterday to "stop nagging at me". I was going on and on, I admit, about a few things that have been happening lately but mostly about my inability to get up in the middle of the night and then function well through the day. As we all know there is not an answer to that dilemma.

The night before last Trev woke me up about 1.30am to say Ray was calling me from the bathroom. Ray was a real mess and I had to shower him, change him, change his bed and settle him back in it. I then listened to him go straight back to sleep while I tossed and turned. I just don't drop straight off to sleep after a big clean-up.

I am not dealing well with the new level of faecal incontinence, I know that, and so I have withdrawn further from the relationship. I love Ray very much but so often now it is like looking after an unco-operative three year old not like living with a husband.

I know a lot of you who will read this are going through something similar, so many changes, so much to grieve about. So the occassional crying spell is a part of your life too. All we can do is dry our eyes, wash our faces and keep on going.

Sue.

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Comments from the community :

Dear Sue,

I can fully understand how you feeling. Me too is having to face an overwhelming change in my husband's continuing deterioration. He too has the same illness like your husband. I also have my crying spell when everything is getting too much to handle. However,I keep on telling myself there are good days and there are bad days and while were in this position this will keep repeating and we just have to let it pass. Who knows tomorrow may be a better day for us.I live with this hope when I have the chance to grab a sleep at night.

My husband is in advance stage now. He lost his capability to talk and when he does, only in whisper or mouthing the word. Sometimes he forgot who I am in his life and stares at me.I am devastated so many times but watching loss after loss but I learn to accept it.

He still can walk if being assisted but only few steps now. He is double incontinent and I manage to deal and adjust myself to that. Actually the real worry is when there are two or three days he doesn't poo. That's when one worries.

Do you use an incontinent pad for him at night? This will help you a lot. I was in your position, then I reali8sed there are incontinent pads for the night that can hold almost two liters of pee and whatever and easier to peel in the morning. At daytime I use pull- ups. If Ray has a community in home respite service provider which is funded by the government you can request the pads from them without an additional cost of what you are requested to contribute monthly as it is included in the funding for dementia clients.

My dearest husband and my best friend of 28 years is now my baby. I know how you feel. The sadness of it all. The loneliness and a feeling of complete isolation especially when one is overwhelmed with lack of sleep, tiredness, financial obligations to face and the inability to immediately adjust to thier downward slide.

However, we carers are strongwilled bunch. We learn so much from our sadness. I have a friend which I considered my mentor. She too looked after her husband who has the same illness as ours till the end at their home. The husband passed away Xmas day after five years.

Written by Rossa, Wednesday, 14 October 2009 21:21

This friend of mine keep telling me that there is an end one day. When it happens though we'll be sad and devastated of this ultimate loss but we can stand tall and be completely at peace because we did the best we can for them. I hope so too.

Be strong Sue and may God watch over us.

Written by Rossa, Wednesday, 14 October 2009 21:31

Thank you for your kind comments Rossa. You have a heavy load to carry yourself.

Like you I am mostly upbeat and accept whatever comes along but sometimes I am too tired and stressed and then I find the going too hard, I have been doing this caring job for more than ten years now and I find myself very tired sometimes.

My mum is in the end stages, doesn't talk, can only walk with assistance but she is in a nursing home aged 91. I had to give up caring for her eight years ago as looking after her and Ray together was too much. But I do visit twice a week and try to do as much for her as I can.

Sorry to hear you have so much sadness ahead of you. It is so hard to see someone so close to us lose their capabilities isn't it? Take care of yourself. Will add you and your husband to my prayer list.

(((Hugs)))) from Sue.

Written by suew, Wednesday, 14 October 2009 23:18

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