Hi Everyone - I am a new member living in the US in New York State. My mother is in between mild and moderate Alzheimer's. She has good days of lucidity and then others that are not so much. Unfortunately, the doctors made us take away her ability to drive and live alone all in one day. She moved in with my family and has been with us for the last six months. Her decline has been steady. She forgets to medicate herself and then sometimes double medicates. We are interested in a lockable pill dispenser, so looking for suggestions on that, but what we really need help with is how to explain to others that Alzheimer's in not an instant switch? The worst part is that friends that visit with her see her for short periods and think that me and my siblings are making it up and that she is capable of wintering in her Florida home, alone. They text her and call her and fuel her anxiety, depression, and aggression. My Mom loss all control over her life in one day and that tears her apart. There are days when she forgets that she has this disease and cannot understand why we are doing this to her. Then she snaps back and comprehends the situation, but mere hours later we relive it all over again. How do we explain that eventhough she has moments of lucidity, that the decline is real and their communications are making Mom's, my siblings, and my lives more difficult on an already difficult journey? I appreciate any and all support and guidance that you may have to offer and thank you all in advance.
help explaining to others that Alzheimer's is not an instant switch?
- Thread starter JPRusso
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- alzheimer's disease
Welcome @JPRusso
This is what happens. Outsiders see people with dementia for short periods and have no idea what they are like 24/7.
Many people with dementia are able to present with what is known as `hostess mode` which makes it even more difficult for carers.
My sister suggested my husband was bored and needed a `project`.
I don`t think it is worth wasting precious time and energy trying to satisfy these people.
This is what happens. Outsiders see people with dementia for short periods and have no idea what they are like 24/7.
Many people with dementia are able to present with what is known as `hostess mode` which makes it even more difficult for carers.
My sister suggested my husband was bored and needed a `project`.
I don`t think it is worth wasting precious time and energy trying to satisfy these people.
Hello JPRusso, this pill box was invaluable in the early days of my mum’s dementia. It locks and you can stack tablets for administering twice a day for up to two weeks supply. It sets off an alarm and my mum just needed to tip it up to get the tablets. Her little dog would rush out to kitchen when the alarm went off if she didn’t hear it!🙂 I expect Amazon have something like this - TAB-TIME
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Sorry to hear about your Mum @JPRusso
In my experience until you come into contact with it personally most people have a very shallow understanding of what Alzheimer’s actually is. Most people seem to think of it as just forgetting someone’s name or getting mixed up.
I used to try and explain it as there are better days and bad days, you’ve seen a better day, not every day is like that. And also how in my experience the progression of the disease was like bumping down steps. You plateau for a while and then seemingly overnight another facet is taken away, something they could do yesterday, they can’t today.
However yes, I sympathise that this is very hard to make people who aren’t there often understand.
In my experience until you come into contact with it personally most people have a very shallow understanding of what Alzheimer’s actually is. Most people seem to think of it as just forgetting someone’s name or getting mixed up.
I used to try and explain it as there are better days and bad days, you’ve seen a better day, not every day is like that. And also how in my experience the progression of the disease was like bumping down steps. You plateau for a while and then seemingly overnight another facet is taken away, something they could do yesterday, they can’t today.
However yes, I sympathise that this is very hard to make people who aren’t there often understand.
How I hate those words: 'He/she seems all right to me!'
If you hear that you know the person doesn't have a clue about dementia. They will undermine you, gaslight you and make you feel you are doing everything wrong.
Ignore them. You know, they don't.
You'll also find these people (known on this forum as 'invisibles'!) are no help whatsoever. They tell you what you should be doing whilst doing nothing to help themselves. Yet if you suggest your Person with Dementia comes to stay with them for a few weeks to give you a break, they are suddenly very busy.
If you hear that you know the person doesn't have a clue about dementia. They will undermine you, gaslight you and make you feel you are doing everything wrong.
Ignore them. You know, they don't.
You'll also find these people (known on this forum as 'invisibles'!) are no help whatsoever. They tell you what you should be doing whilst doing nothing to help themselves. Yet if you suggest your Person with Dementia comes to stay with them for a few weeks to give you a break, they are suddenly very busy.
Thank you so much for taking the time to respond and for suggesting a pill dispenser. I will certainly look into and wish you strength on your journey .
I like the term ‘invisibles’. We are learning more and more them. Thank you for responding.How I hate those words: 'He/she seems all right to me!'
If you hear that you know the person doesn't have a clue about dementia. They will undermine you, gaslight you and make you feel you are doing everything wrong.
Ignore them. You know, they don't.
You'll also find these people (known on this forum as 'invisibles'!) are no help whatsoever. They tell you what you should be doing whilst doing nothing to help themselves. Yet if you suggest your Person with Dementia comes to stay with them for a few weeks to give you a break, they are suddenly very busy.
I agree. I don’t know why I feel the need to gently explain to them or explain at all. Possibly it is simply a defense of mine.
Sometimes our proximity and emotional investment to the situation make it difficult to organize the most effective message we need to send. I was thinking that an outline as a starting point may be helpful; timeline of diagnosis, info on the diagnosis, treatments and challenges of the diagnosis and how it’s not a straight line full of ebbs and flows, how your family is dealing with/diagnosis, and the part her friends can play in helping our mom, a request for their compassion and empathy even if they don’t understand or accept the situation, a gentle reminder that counterproductive engagement will not be permitted. Hopefully, empathy and understanding follows.
Then of course…this is how I really feel about people that make life more difficult…
They don’t realize how much more difficult they are making this, not only for us but for our mom. I don’t want them to stop engaging with mom, but they need to understand that they can help the situation or hurt it, and our family will respond accordingly. The ones fueling mom’s thoughts of her lost lifestyle and independence, only hurt her during her most lucid time periods….they need to understand in no uncertain terms that while they are lashing out at us and our family, the person they are really hurting is mom and we will do whatever it takes even if it means cutting them off. We may or may not be able to reason with them and bring them around to any kind of understanding, primarily because loss of independence and health is probably foremost in their minds, and frightens them as well. Her situation makes them confront their own mortality and they’re in denial. That’s about where my compassion for them ends if they can’t get on board.
Thank you for listening.
Thank you. I am trying to let it roll off, but some days are easier than others. I guess I take it as a direct insult to my character.
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