Husband thinks he’s perfectly okay.

[NJEC]

Hello everyone. My husband has recently been diagnosed with Lewy Bodies Dementia and early stage Parkinsons. My sons and I had noticed changes that he was unaware of and he doesn’t feel any different, so he’s not really accepted anything is wrong. He’s only 69. Other than having to surrender his driving licence his life hasn’t had to change, but my life has changed overnight. I feel so selfish because I feel trapped into becoming his carer. Does anyone else feel that way? Is it a normal reaction , or am I a terrible person?

 

[takingstock]

Hello everyone. My husband has recently been diagnosed with Lewy Bodies Dementia and early stage Parkinsons. My sons and I had noticed changes that he was unaware of and he doesn’t feel any different, so he’s not really accepted anything is wrong. He’s only 69. Other than having to surrender his driving licence his life hasn’t had to change, but my life has changed overnight. I feel so selfish because I feel trapped into becoming his carer. Does anyone else feel that way? Is it a normal reaction , or am I a terrible person?

Oh you are definitely not selfish or a terrible person. My husband has LBD, some days I feel exactly the same, in fact most dsys. Trapped, isolated and having my world shrink beyond recognition. It's an enormous hill to climb, I just take a day at a time, but yes it is difficult, please chat when you feel the need

 

[Gosling]

Hello @NJEC and I'm sorry to read about your husband's recent diagnosis. No, you are definitely not a terrible person. You never imagined this scenario in your later years, and to be honest, yes it's tough caring for a loved one with dementia. It is a normal reaction, so please don't think you are being selfish.
I am attaching a link which you may find useful for information:

Dementia with Lewy bodies: Understanding your diagnosis

If you have recently been diagnosed with dementia with Lewy bodies, this booklet is for you. It will help you, and your family and friends, to understand more about the condition and how it can affect you.

www.alzheimers.org.uk

Please remember you ae never alone here. People really do want to help with sound advice, suggestions and sometimes just a listening ear. Take care.

 

[NJEC]

Oh you are definitely not selfish or a terrible person. My husband has LBD, some days I feel exactly the same, in fact most dsys. Trapped, isolated and having my world shrink beyond recognition. It's an enormous hill to climb, I just take a day at a time, but yes it is difficult, please chat when you feel the need

Thank you. It’s so helpful to know that I’m not the only one to feel this way. I appreciate your reply so much.

 

[takingstock]

Thank you. It’s so helpful to know that I’m not the only one to feel this way. I appreciate your reply so much.

Keep posting, we're in this together, and together we're stronger. Sleep well and be kind to yourself, tomorrow's another day

 

[Lindaloose13]

Hello everyone. My husband has recently been diagnosed with Lewy Bodies Dementia and early stage Parkinsons. My sons and I had noticed changes that he was unaware of and he doesn’t feel any different, so he’s not really accepted anything is wrong. He’s only 69. Other than having to surrender his driving licence his life hasn’t had to change, but my life has changed overnight. I feel so selfish because I feel trapped into becoming his carer. Does anyone else feel that way? Is it a normal reaction , or am I a terrible person?

100 per cent agree!!!!

 

[Lindaloose13]

100 per cent agree!!!!

 

[NJEC]

Oh you are definitely not selfish or a terrible person. My husband has LBD, some days I feel exactly the same, in fact most dsys. Trapped, isolated and having my world shrink beyond recognition. It's an enormous hill to climb, I just take a day at a time, but yes it is difficult, please chat when you feel the need

Thank you 😊

 

[NJEC]

Oh you are definitely not selfish or a terrible person. My husband has LBD, some days I feel exactly the same, in fact most dsys. Trapped, isolated and having my world shrink beyond recognition. It's an enormous hill to climb, I just take a day at a time, but yes it is difficult, please chat when you feel the need

 

[Bevhar]

Hello everyone. My husband has recently been diagnosed with Lewy Bodies Dementia and early stage Parkinsons. My sons and I had noticed changes that he was unaware of and he doesn’t feel any different, so he’s not really accepted anything is wrong. He’s only 69. Other than having to surrender his driving licence his life hasn’t had to change, but my life has changed overnight. I feel so selfish because I feel trapped into becoming his carer. Does anyone else feel that way? Is it a normal reaction , or am I a terrible person?

I feel exactly the same My husband is 68 with Alzheimers Life has been turned upside down Today has been an awful day & I don’t know what I would do without the wonderful advice given on this forum You certainly are not a terrible person I think it just as tough for cared if not more so Glad you’ve found this forum you are not alone xxx

 

[Babab64]

Hello everyone. My husband has recently been diagnosed with Lewy Bodies Dementia and early stage Parkinsons. My sons and I had noticed changes that he was unaware of and he doesn’t feel any different, so he’s not really accepted anything is wrong. He’s only 69. Other than having to surrender his driving licence his life hasn’t had to change, but my life has changed overnight. I feel so selfish because I feel trapped into becoming his carer. Does anyone else feel that way? Is it a normal reaction , or am I a terrible person?

Hi there, I definitely dont think you are terrible… it is so refreshing to hear honest thoughts - this ‘caring’ role is a real raw deal. It is your life that has changed beyond all recognition.
I too feel trapped, trapped in a house, trapped in a role, trapped in a relationship that isn’t a relationship anymore. I don’t t think anyone would choose this and it is rather rude that we are expected to pick up this very complicated life, holding the happiness and health of another person totally.
I am glad you have voiced what many of us feel.

 

[Sadie23]

Oh you are definitely not selfish or a terrible person. My husband has LBD, some days I feel exactly the same, in fact most dsys. Trapped, isolated and having my world shrink beyond recognition. It's an enormous hill to climb, I just take a day at a time, but yes it is difficult, please chat when you feel the need

You are only human and not a terrible person! I know how you both feel! I am waiting in the results of the Memory Test/CT Head Scan For my Mum. She told the Memory clinic she is not loopy! She came to us for a short stay to recover from a bad back and 9 months later we have had to move her in with us as she can’t really look after herself, but doesn’t recognise how reliant she is on other people. I very much appreciate she has lost her ”freedom”, but so have I. I work full time and also have an elderly dog that needs a lot of care and between the two they drive me mad! Selfishly, I feel I have made many more adjustments and my life has changed beyond recognition and I know things are not going to get any better!