Qué alegría! Blessed Sunday. Your wonderful news and 4 Thai boys rescued. Big hug.
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Dear @duvie, you have it in yourself, you already said the magic words: everyone eventually gets called up to the Lord. If you are able to think that this is fundamentally about Lilbit and the Lord (who knows what kind of talking they are having) and that we are mere tools conveying His will, that may help. Open your heart to His will and to His love, do the best you can and never forget that it is for Him to make the decisions. Leave your feelings of loneliness, powerless, uncertainty and exhaustion in His hands. He will know what to do and how to help you and Lilbit lovingly. Love and peace
Thank you IndianaScott, it is a weird thing for caregivers because, especially at the beginning, we are confronted to this 2 persons at once, not knowing which one is listening in the actual moment . It varies during the day, even during a coversation. It is not one state and then the other, it is not even a linear progressive change. It comes and goes in different degrees at different moments in time. Thank you for your words of strength, courage and peace. They are a beacon, in themselves they are goals to walk to.
To lie to your loved ones in this situation is tricky….I also try hard not to with my mom, but sometimes I realize it is the only way not to confuse her with complex explanations, or adding to her anxiety. Let's say she want to visit a cousin who's in an hospice. I know it could be very disturbing for her to see her cousin who she loves dearly in the present state. Her cousin is not able to keep a conversation, she is basically lost in her mind, and very little of what she was and shared with my mother is left. So when my mom proposes to go and visit her, I simply tell her that it is not allowed. She regrets that, she brings some memories of their relationship and then change the subject. I couldn't possible bear my mom's suffering seeing her cousin so ill or even just thinking and imagining that her cousin is so bad that she is beyond normal interactions. I don't want that image in her brain. If she asks for a pill she is taking, I give her half truths, not telling her that it is for her dementia but simply for improving her memory. Sorry. Perhaps what I am saying is too obvious. But at the beginning it was an issue. How much should I tell her, is it ok to lie to her, etc My first goal right now is avoiding stress, anxiety, worries, confusion. I wish I could say my first goal is reaching happiness, happy moments. But for now I just can concentrate in the basics.
I believe telling or not telling, talking or not talking about the issue, is it good or bad, depends a lot on the person. Some people are better prepared, have better personal resources to have a talk about them going on Alzheimer or other type of dementia. Some people are not, and they would only get anxious, stressed, which is not going to help their situation nor the planning ahead. I believe it depends a lot on the person and the stage of the disease. And in some way, they give us signals if they want to know or not and if they prefer just to rely on us to make decisions and guide them. I feel like that's happening with my mother. She's 88 and she comes from a very different generation. She is using some medications, doesn't ask what are they for, and at most I would tell her they are for improving her memory. If she realizes once a week that her memory is failing and bring the issue at our conversation, I try to be natural and tell her that it is true but it is only natural as we age. That would be it. I fear that if I go beyond that, she would get anxious and suffer for something she can't do anything about. It is something that protects me but also her. And it would be a conversation she would forget in an hour and in 4 more days we would be there again….I feel it is pointless to have that conversation. I have no relatives so there is no one else involved. But if there were, I believe I would try to do the same. I am lucky in that she's smart. And though that issue has not been talked about, a couple of years ago she took some measures that could probably be explained by her anticipation of something happening to her in this regard. Giving me a power attorney, making sure utilities are paid from her banking account, etc. That simplified a lot of things.
There is no one solution or strategy. The person, the context, the phase of the disease, people involved. It has to be a customized strategy. Health care providers should be able to help to think through this and develop the best strategy possible.