Feel like I have disappeared!!

[Mufti]

Hi For over a year now my partner of 40 years has been failing to recognise me as his partner. He "accepts" me as a very nice lady who helps him a lot, other days he is so muddled he sees me as a different person if I have nipped upstairs and come down again. He feels there are lots of other people "passing through" the house. He constantly hides his wallet and keys and I spend a lot of time searching!! At times he cannot even recognise the home. I am so sad at 40 years of shared memories just gone! I feel at times like I have just disappeared! When he is upset or agitated I cannot even try to look at old photos or talk about holidays etc - he thinks I have left him and am living with someone else. It is so hard some days. I tried day care but it didn't work as I got such a backlash in the evenings. I'm afraid that if he goes to respite it may just break that final fine link we have, and I'm considering having carers in the home to try to get a few hours offf - I am so bored and frustrated at times and then the guilt sets in - know what I mean?? Just thought I'd post my first thread. Hello out there!! Mufti

[nellbelles]

Mufti

My heart goes out to you.

Only once has my husband not recognised me, he asked if I was the lady looking after him? I felt physically sick, I cannot imagine how hard it must be for you.

On a different level there must be some connection though as your partner still seems to accept you caring for him.

Sending (((HUGS))) Helen x

[2jays]

Hi mufti
Oooh I feel for you. My experience of this }^*€< disease is with my mum - and that's hard enough, can't (sob don't want to) imagine what it would be like if it was my OH.

Bearing in mind I have no experience of your situation..... What I have read on here is that he hasn't forgotten you it's just you don't look like the person he has in his mind and if (hard one that) you can "let go" and accept the way he is now and be who ever he thinks you are it's not so painful, because you can still talk about your shared memories - but ( ouch) not as you. Another thing I have learned, which I use with my mum in her "who are you? Are you my sister" (she doesn't have a sister) I use the traffic light system. Try to keep mum on green - she talks about her lovely daughter who is so special to her, who is still at school. (sometimes I am a bit older, but she still likes me ) when amber moments happen I try to divert back to green. Red moments - when mum tells me to leave as I am upsetting her - I leave the house for a few minutes, walk back in as if I have only just arrived and act ultra happy to see her. It's exhausting, demoralising bit it works for me.

Another thing I have read on here is when partners eventually move full time into care, they have a better relationship with their partners, because the yo yo of having to care for their loved ones is shared, so there is more time to have a quality relationship.

Not sure if I am helping you, I hope so.

The one thing I have (finally) learned is mums world is her world as it is now, i cannot ask her live in my world anymore - whilst I am with her I live in her world, and so long as I take away her worries (as best I can) we have a great relationship.

She loves me, I know because she tells her sister who visits her, what a wonderful daughter she has, and her daughter has children and her daughter is a grandmother. She tells me her memories about what she and her daughter did last week, even if at the time of making these memories I am her sister.

What I am trying to say is, the fact mum sometimes doesn't always recognise me as her daughter, emotionally she always recognises me, she doesn't recognise my face, but she knows I am not a stranger

[Izzy]

I'm sorry thIngs are not good for you just now Mufti. I can understand how upsetting it must be when your partner doesn't recognise you. This happened a lot with my mum but so far not with my husband.

I think your idea of carers during the day to help you get some time to yourself is a good one.

I know that 2jays' suggestions are sensible but I have to admit I would find it hard to 'be' someone else. I think the approach she describes is the 'Contented Dementia' one. I wondered if this thread would help you:
http://forum.alzheimers.org.uk/showt...=Communication

[Mufti]

Mufti

My heart goes out to you.

Only once has my husband not recognised me, he asked if I was the lady looking after him? I felt physically sick, I cannot imagine how hard it must be for you.

On a different level there must be some connection though as your partner still seems to accept you caring for him.

Sending (((HUGS))) Helen x

HI Helen - thanks ! Today was an odd one - I was "me" for about an hour and then it went again - but lovely while it was there. My new thought is "keep it in the day/hour/minute" and ask "how important is it in the great plan????" xx Mufti

[Mufti]

Hi mufti
Oooh I feel for you. My experience of this }^*€< disease is with my mum - and that's hard enough, can't (sob don't want to) imagine what it would be like if it was my OH.

Bearing in mind I have no experience of your situation..... What I have read on here is that he hasn't forgotten you it's just you don't look like the person he has in his mind and if (hard one that) you can "let go" and accept the way he is now and be who ever he thinks you are it's not so painful, because you can still talk about your shared memories - but ( ouch) not as you. Another thing I have learned, which I use with my mum in her "who are you? Are you my sister" (she doesn't have a sister) I use the traffic light system. Try to keep mum on green - she talks about her lovely daughter who is so special to her, who is still at school. (sometimes I am a bit older, but she still likes me ) when amber moments happen I try to divert back to green. Red moments - when mum tells me to leave as I am upsetting her - I leave the house for a few minutes, walk back in as if I have only just arrived and act ultra happy to see her. It's exhausting, demoralising bit it works for me.

Another thing I have read on here is when partners eventually move full time into care, they have a better relationship with their partners, because the yo yo of having to care for their loved ones is shared, so there is more time to have a quality relationship.

Not sure if I am helping you, I hope so.

The one thing I have (finally) learned is mums world is her world as it is now, i cannot ask her live in my world anymore - whilst I am with her I live in her world, and so long as I take away her worries (as best I can) we have a great relationship.

She loves me, I know because she tells her sister who visits her, what a wonderful daughter she has, and her daughter has children and her daughter is a grandmother. She tells me her memories about what she and her daughter did last week, even if at the time of making these memories I am her sister.

What I am trying to say is, the fact mum sometimes doesn't always recognise me as her daughter, emotionally she always recognises me, she doesn't recognise my face, but she knows I am not a stranger

Thanks for taking the time to reply !! Had an hour of being remembered today and it felt great! Mufti

[Helen33]

Hi Mufti,

I always thought it was amazing how these moments can keep us going. I'm glad to read that you had an hour today where it felt good. I like your resolve.

Love

[Billie61]

Hmm...it's so sad.

MIL still knows that she knows me, but doesn't quite realise how she knows me. She thinks my OH is her dad, that her daughter is her sister and that my daughter is her daughter. Crikey, it gets confusing.

Having her live with us is really hard and I know that one of the criteria for her going into residential care will be that she doesn't know who we are and is worried about us being in "her" house. She often tells me that I should get out and can fly off the handle at the slightest thing, but the majority of the time she is happy and that is all we can ask for now.

At least we have time to find a care home that suits her needs, but I know it will be hard.