Lewy Body Dementia

My Mom has this dreadful disease. It is so hard to know what life was even like prior to this.


I know that I would be coping much better if only my siblings would have pitched in and took her for a weekend or a week for time off. I am so burned out. So tired.

It is draining emotionally, financially and physically. However, I do what I have to do.

There are no alternatives at this time.
Does anyone reading this have a loved one with Lewy Body Dementia? If so, can you tell me what to expect in latter stage?

Thanks.

And does anyone know why siblings become invisible when you desperately need their help? They do not even visit her. No cards sent in mail.

I have asked they send her a card once a week at least. They sent one card and stopped. That was over 6 months ago. Feel isolated. She deserves better and the Doctor says so do I.

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Thanks for Encouragement
by: Anonymous

Thanks for all for comments. It helps to be "heard" and I have taken your advice to heart.

I have tried everything possible to get help from my siblings. They are not going to help with the load. They only do holiday (including birthday visits) only. No visits to just check on Mom. No respite care whatsoever.

I do think I will let it go because like the last commenter said, it just drains me more...don't need to waste any more time on expecting things from any of them. I feel like it's just going around the same mountain over and over, whenever I have tried to talk to them about help.

It's the same conversation and it just leaves me bitter, angry, and resentful. I am learning to take time to rest as needed and let things go around the house. I did reach out to Hospice since first posting but they cannot help until it is Mom's final 6 months.

The Doctor does say she is in the last stage of this awful disease but cannot predict how much time exactly that she has left. We are signed up with them for when the time comes. Until then, I am doing what I must do.

I really do not have a choice. One of my siblings commented that "people know what they are comfortable doing" and some are just not comfortable caring for their Mother in that way"

-I guess he doesn't take into account that I may not be comfortable with it either but I don't have the "luxury" to even consider not doing it. I would never abandon my Mother and I know we cannot afford long term care out of pocket.

We are in the middle and unfortunately, there's nothing that she qualifies for that covers it. I promised to keep her at home anyway.


I do know that prayer helps me. I do know that you all have helped me. Thank you so much for caring enough to reply and for sharing with me. I pray for you all too. May God bless you all ~

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I am in the same boat
by: Anonymous

Totally understand what you are going through. It is the same with me. I am trying to find ways to deal with stress and be able to take breaks. Please contact local Hospice and ask for counseling. They should be able to help . I am praying for you and your Mother. I also am making the call for help. I will update asap.

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Lewy Body Dementia
by: Anonymous

I feel so sorry for you, the illness your mother has is dreadful, you could look it up on the website and it should give you an idea how far it will progress.

As for your siblings do they know the full extend of your situation, if they do then `shame on them`.

You need a break, and badly, otherwise you are going to go downhill, and then what use would you be to your mother, explain this to them, if they will not listen then is there anyone else in your life that could get through to them.

Yours is a cry for help, and I hope you get it, sorry that I don't have any answers for you, I found myself in a similar situation with my dear mother and found it very hard, it was dreadful and there was no one to turn too.

You love your mother, and she is lucky to have you, and I hope your siblings will come to their senses and realise you need help.

Gloria

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We are here
by: Anonymous

When I read your post my heart just sank. I feel so for you and your mom. I can only speak with you about the siblings disappearing act.

There are 5 kids but only my brother and I have been the main caregivers. In order to save my sanity I stopped expecting anything from them.

That helped me from spending what little i had left on anger at them. They are the ones that will have to deal with their own guilt when mom is gone.

For you, I can only send love and a hug through the website. Know that you have been heard. I will continue to think of you and your letter for several days I'm sure.

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