constant sadness

[peppapug]

I guess I am just offloading. I haven't been here for a while. My mum has AD. I am focussed on fundraising and charity work for research but now mum has been in care since January I find it harder and harder when I thought it would get easier.

She is only 64. I keep thinking we should be shopping together, enjoying time together, instead I visit and leave with such sadness. I think she knows who I am but can't answer the question of who I am. She seems happier than she used to but the less I get from the visits the worse I feel.

It seems she is the first thing I think of in the morning and the last thing at night and not an hour goes past she isn't in my thoughts. It's really wearing. I feel guilty if I don't visit, guilty if I do and it's short, guilty for feeling sorry for myself but I just miss my mum and everyone else seems to be getting on with their lives and I feel her loss more each day.

It's not a question, it's just a share really.

 

[marionq]

Do you have children? I remember when they were young that I was overwhelmed at times thinking or overthinking their lives. It makes no sense but is hard to avoid when you love someone. Your Mum seems happier and needs you less. That is success. She is finding a new way to live which depends less on you. Success again! Give yourself some time off you deserve it.

 

[peppapug]

Yes I have one son who has just moved to secondary school so needs me less. This means I have more time on my hands and I am craving the old mum I would have enjoyed spending this time with. I guess it's the spare time that's causing this. Will have to start filling it.

 

[jaymor]

If your Mum is happier then she is getting a great deal out of your visits.

Emotion stays long after the memory has gone. Your visits make her happy, she might forget you the minute you leave but you have left her in a happy place in her mind and that will last. She won't know why she feels happy but knows she is.

4 years ago my husband lost me as his wife, he thought I was the nice lady who looked after him while he waited for his wife. I was very upset but when I thought about it, he thought I was nice and he was happy to spend time with me and trusted me enough to help him when he needed help. So I was content with that. It is still the same now he is in a nursing home. He talks to the staff about his wife but when I get there Inam not the person he is expecting. I am probably 40 years older and 4 stone heavier than the wife he remembers

Try to stay with the positive things, hard to do I know, I have lived with this loss for 4 years and now and again it hits me.

Jay

 

[peppapug]

Thanks for your reply. Funny you say that, sometimes she talks to me about this person who is lovely and knows everything and she is going to check with her and it's me she's talking about! She often talks and asks about me to me but it's done with fondness.

She has had AD since 57. There was still moments of lucidity up until the last year. I just thought it would get easier but emotionally it's getting harder.

 

[Arbie]

Hi Peppapug - I'm sitting here feeling exactly the same as you. My mum's been in hospital 8 weeks and is about to go in a nursing home. She does still recognise me and my dad but spends most of her time wandering around or crawling on the floor. She weighs only 6 stone now.

Like you, I come away from every visit feeling miserable and I miss her so much. I miss hearing her on the phone, miss popping round for a cuppa and am dreading Christmas. My family are understandably getting a bit fed up of me being so down in the dumps but I can't get her out of my mind. It's like grieving but she's still there to remind me every day what I'm missing. And I'm also so worried about my dad too who is not coping being on his own after 55 years of marriage.

Anyway, we have to stay strong - I'm sure it will get easier and this hard time will pass for both of us xx

 

[Sweet]

I feel that same sadness, it's sort of grieving for someone who's still here. Like you my mum is constantly on my mind, my brothers seem to treat it all so matter of factly and carry on normally, but it affects my every day life, because I miss her so intensely. Mum sometimes writes little notes pleading for 'someone to be with her' and quietly cries when I see her. When I leave her I always have a guilty feeling I've abandoned her. My mum just wants to be with me really and its a rotten feeling that I can't manage. So I thank others here for sharing their feelings as it makes me realise others go through the same things.

 

[Taraloka]

My Mammy went into CH one week ago.....it feels like a year ago. The pain and the guilt I feel is overwhelming, my whole life has changed axis. She is on my mind EVERY minute every hour. I watched Downtown Abbey last week which was a very brief respite but the pain returned at every ad break! Nothing is the same, and I've forgotton how to smile. If I could put my hands on her and remove all her pain into me, believe me I would. Just for her to go home to dad.
You are not alone but this will not ease your pain. I hope the words everyone writes in this thread will bring you a little comfort..... And remember there's always Downton Abbey on Sunday!!!!!! X

 

[annii1]

I saw mum today, she was crying, saying her mum had died, so cruel she goes through that pain again and again. Very confused, sad, but a few smiles and loved seeing my brother with his little boy, so it turned out ok, I just hope these small moments of happiness last a little while for mum before the sadness sets in again. We can only do our best for our loved ones now, we know it's unsafe for them to be at home, but that doesn't make it any easier. Best wishes

 

[peppapug]

I visited mum today with my 11 year old son and husband today. We are very lucky she's in a great care home and we can sit in the lounge and interact with the other residents. There are two men that call it their gang and cheer all the ladies up if they are down. I smile and I laugh and we had a great visit. Mum made no sense at all and I could smell she had an accident which makes me want to run for the hills. She would hate that.

It's just so cruel and so long lasting. Glad i'm not alone though. All your words are so kind. My son is brilliant and hosts the room. The old people love him and mum just loves him being around. He thinks she is "awesome" and she is his hero. Always have had a close relationship but it continues despite her confusion. Kids have no inhibitions.

 

[Neph]

I was feeling like this earlier this year and don't get me wrong I still have days like it, today being one of them. Mum went into nursing home last January and her prognosis gave her no more than a year, but she is still here, just. Visits are painful, mum has no idea who I am and has lost the power of speech pretty much.

I started doing a couple of afternoons in a charity shop which has helped dramatically, but I still feel like you do a lot of the time, my two are 16 and 18 and really don't need me all that much anymore.

Suppose I'm just letting you know you aren't on your own.

 

[peppapug]

Thank you.. when I posted this I felt like I was going to self combust. It was driving me insane! Like you say, good days and bad days and it is so painful and cruel. Because yesterday is no different to tomorrow no one around you realises how you feel. Nothing has changed, she still has Alzheimer's but for some reason grief hits you but you don't get the luxury of an end that the outside world can understand.

 

[Cburrows577]

I don't have much to say in terms of positive words but totally utterly and completely understand. My mum went onto a home 5 weeks ago. I am feeling the huge guilt, the sadness, the grief. I think I have probably been in denial for the last few months - thinking / hoping mum is not as progressed with this ******* disease as she is. Today, the home called dad and said they think she needs to move to a higher level of care in the home and I am floored yet again. I have not got used to the fact she is even in there yet, let alone needs more help. Mum is in a home 2.5 hrs away from me & with a young family and full time job can not get to visit as much as I want. Feel like I have abandoned her. Hate this - but I know she is in the right place and getting best care possible. Still feel sad though. But tomorrow is another day and with this illness we all know, we all have to hope for happier tomorrow's. Accept the tears when they come, but then dry those eyes and accept and get on. Think of the good times & those wonderful innocent happy happy smiley moments you get with an Alzheimer's sufferer - those for me now keep me going & give me the strength to keep going. Sorry - seem to have have off loaded myself there. Thanks for listening ... Xx

 

[Annebags]

Just to say that you are not alone. Mum went into a nursing home 4 weeks ago and I think I am coping less well than her. I have to admit to myself that, unlike others, I could not cope with looking after her any more. Yesterday her old home phone was disconnected. A stupid thing to be upset about but I have rang that phone twice a day for 30 years ...

I don't think there are any answers. In a sense we are going through bereavement even though the person is still alive.

 

[JXPW]

Just to say that you are not alone. Mum went into a nursing home 4 weeks ago and I think I am coping less well than her. I have to admit to myself that, unlike others, I could not cope with looking after her any more. Yesterday her old home phone was disconnected. A stupid thing to be upset about but I have rang that phone twice a day for 30 years ...

I don't think there are any answers. In a sense we are going through bereavement even though the person is still alive.

I remember feeling exactly the same about the phone - it was something I found very hard to give up. 3 years on - so one day I actually rang it again and I was so pleased when no one answered... Only the phone company recorded message telling me this phone number was no longer connected. I think if someone else actually answered and had been given their number I might have just had a meltdown. It's so hard how the smallest of things have an effect don't they?????