hillym

Originally Posted by Reds

Great you brought this subject up Hopefulasever!
Not quite sure how to follow a thread as I don't use this site in the hope that it is irrelevant. Sadly it is not and your message rangs bells with me. My husband has Parkinsons/Lewy Body disease ...dementia and I'm finding it very hard to cope at the moment. I am 57 and my husband was 61 at diagnosis. Like you, I do not receive cards or gifts unless I buy them myself. It is all so sad. I have lost my husband but he is still alive and walking and talking, though he too looks like a robot. The blank face is so hard to cope with as its impossible to read...
I also find that friends don't really understand - although they can be very supportive, it is so difficult to explain the way life is and also you don't want to be the miserable one all the time. Like you I feel very alone in this.
This is the first time I have responded to a message and I've not really read things before but your thread came up in an email today and caught my eye. We are a similar and age and face similar things by the sound of it. Would be pleased to chat if you want to?
Hillym



I feel quite alone as do not see/chat to enough people generally due to my job/lifestyle. One of my friends which I had always considered a 'best friend' has not been in touch with me for ages and it hurts. She cancelled a couple of our eves out for different reasons but considering my husband has Alzheimer's I just feel she could have at least pushed herself by now to have met up or even sent a text saying 'thinking of you, hope your hubby is ok and that you are coping'. i don't expect people to run around after me just because my hubby is ill but like you it would be nice if they could be a bit more supportive as I too think that is what a true friend should be like. I know I would at least try to be sympathetic and help them along the way.

I have 3 sisters, one is a reasonable listener but probably only speak once a month usually on the phone, one I hardly see and if I do its very quick but she is sympathetic in a way, the other eldest sister doesn't seem to want to know about Alzheimer's even though I have some communication with her, she just sees me as her little sister and treats it like my husband has just a cold or something. Just cannot understand it when I had hoped always we could be close.

This week I was very upset due to how my husband behaved about our anniversary so I telephoned my mum to apologise to her as she had rang earlier that day to say happy anniversary and I was a little tearful. She was very abrupt and said I should think so and that I should just accept it and get on with it like I should with anything that can't be changed! I felt like an emotional wreck that day so felt very hurt and shocked by this! I know she wouldn't like to cope with what I have to!! May be she thought that tactic would work but it was not tactful of her. Just a bit of empathy would have gone a long way. I am visiting her on Saturday just like I always do but don't feel like it now for this week and will find it very hard not to show my feelings.

I think anyone I know wants me to look happy and behave as though my life is wonderful. I do enjoy what I can, look young for my age, cope very well but once in a while I am bound to be upset that my husband was diagnosed with Alzheimer's at the age of 58 and its not always easy to live with. Its hard not to feel the enormous impact of the disease myself, I feel so sorry for my husband but it takes over my life, and I too don't know what to do/think.

I too feel like I need one to one counselling to help me to vent my pent up feelings because I have no one who really wants to be close to me and understand how difficult it is to cope mentally/emotionally when someone has a brain disorder (sorry if thats not quite the right word) that you live with all the time. However, I find it hard to trust someone and also it is when/how to spend that time on apointments, whether to go to NHS or to afford it privately and I think will it actually help or make things worse as I feel exhausted about the whole situation anyway.

THANKS again for this subject and good luck to you and everyone who finds communicating with others about this extremely difficult, frustrating matter.