Ricardo868 Asked August 15, 2023
Who is the voice of the demented?
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Everyone seems to be focused on themselves rather than the patient.
The patient is most important here,without him/her no jobs for caretakers…I hope im
not removed or blocked from this site for this truth I speak but I hear nothing really about how to care for the patient,nothing about activities nothing about the patient.
i pray for all elders especially with dementia because most people do not make extra effort to help them still live life….my mom is demented and I speak from experience…We need more love and compassion…God sees and knows
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I know you didn't mean to anger people on this site--but you are a relative newbie to this forum, and over the years, for me, it has provided the ONLY source of support and common sense as I navigated the waters of CG for one aging parent after another, not to mention taking care of a DH who is supremely depressed as HE cares for his mother who has mild dementia and is making each and every day a little slice of hell for so many people.
Every, Single. Day. we put her first. We just cancelled an anniversary trip we wanted to take b/c he can't leave her long enough--it's just him and his 2 sibs.
Once again I am relying on this community of CG's to help me keep sane during a time of utter madness.
I totlally disagree with your comments that 'people' don't make the extra effort to help people w/dementia to still live their lives---most of the people who post here are frustratingly exhausted with their efforts to do JUST THAT.
I know that all the compassion my DH owns is being burned up in taking care of and keeping his mom 'happy'.
And often, let us not forget, dementia is NOT pretty, fun, sweet or charming. It can and does bring out the worst, the absolute worst in people.
And who gets the brunt of the anger? The CG's, family or not.
SO MANY posts are about 'how do I keep my LO with dementia happy and calm?
Who is the voice of the demented? Well, they are still their own voice. It's left to us to figure out what they need/want that can be met, realistically.
Do a few more years of CG and you will see what I mean.
And then there are the posts from people who have been in the trenches for years and are overwhelmed and just trying to cope because the needs of their care recipient have become too much.
And a minority who like to post about how wonderful it is to be a caregiver. Mostly we feel glad for those people unless they become sanctimonious and start to scold people whose situations they do not know or understand.
There was a saying - if you've seen one case of dementia you've seen one case of dementia - and it's so true. I'm glad for you that your dear mother is sweet and compliant and not bitter, angry or violent. I'm glad that she is still physically and mentally able to appreciate the activities you plan for her. My sincere hope for both of you is that you never reach the point of physical, spiritual and mental despair that has driven so many to seek advice on this forum.
For many of us who post daily for years on this forum (me, 2019) our "demented" are our parents, not just patients. As others on this thread have noted, we are mostly not paid, and it also comes at an emotional and relational cost. My husband and I have been unpaid caregivers for 5 elders of our family. We've been through all types of trainwrecks and surprises since 2014. None of our LOs have robust financial resources, and they are living quite long lives. Now we still have 3 surviving for which we are PoA: my MIL (89) in LTC facility on Medicaid; my Aunt (104, who helped raise me) at her home with 2 family caregivers (1 underpaid, one not at all), and my own Mother (94) living in her home next door to mine. For now things are under control, but that can change at any moment.
What type of "voice" do you think the demented should have? Do you think they don't have enough legal advocacy? Or medical? Dementia breaks a lot of hearts, and it is a seemingly intractable problem. That's why I'm asking for specifics from you: giving a rallying cry just isn't enough. You have to identify specific problems and then suggest specific, reasonable solutions.
Bless you for your concern. May you gain clarity, wisdom and peace in your heart as you work with those with dementia -- and their family caregivers.
To cause anyone to take the time to try to explain - or defend themselves as care givers is truly mean-spirited and cruel of you. You should work on that. You wasted time from people who don't have time to spare - and who have gone thru enough.
You need to look within yourself - I think that's the issue. You stated, " We need more love and compassion." That's correct - YOU need compassion for care givers.
If history has taught us anything at all (I don’t see much evidence of that, but that is another topic,) we know that plenty of perfectly earnest, kind, well-intentioned people have really sh***y things befall them. Kushner uses the story of Job to make this point. Biblical enough for you?
If anyone is bending over backwards for a hopelessly demented old person, destroying their own lives/finances because they fear God’s retribution, well, they are bettin’ on a losin’ horse. Why? Because plenty (I daresay, the majority) of “bad” adult children do JUST FINE once they place their elderly parents somewhere reasonably decent (on parents’ or Medicaid’s dime!) and get on with the only life they will EVER have the chance to live. These “bad” adult children who maybe don’t visit very often, if at all, who refuse to get over-involved in “advocating” (haranguing), who secretly or openly hope that The End will come soon, so there might be at least a little inheritance left—very rarely get “punished” by God, Fate, Providence, karma, whatever.
But if believing that “what goes around, comes around” makes you feel happier, smugger, safer, holier—have a party! Just because you are a practicing Judeo-Christian doesn’t mean you have to be a martyr. There have been enough of those!
Aging is a time of loss. I speak from experience, being 81 this year. You can start from the tiptop of the head and work your way down. Loss of hair, eyesight, hearing, balance, brain power.
Move a bit lower and you will note a weakening of the major systems--heart, lungs, kidneys, gut, vessels. Lower still and you see the mobility is poor; there's little stamina and less appetite; there is musculo-skeletal pain that is almost constant.
Today many and perhaps most of us live long enough to lose our very capacity to remember, to think, to know who we are and who our loved ones are. That is to say we lose our very selves to the aging process.
There can never be enough help to cure everything, but amidst this tragic reality there are many who live their lives attempting to provide loving care and dignity. I agree with you in that we need SO MUCH MORE. But daily I see here the struggle and the love.
We are imperfect animals in a very imperfect world. Compared to so many others in the world we might be considered privileged. Yet it cannot ever be enough. Your post serves as a reminder of that.
The man who had been my guiding light in life, the Hansel to my Gretel in every dark woods of life, was descending into the depth of profound change.
I was desperate for help. I was made, by my brother, his POA and the Trustee of his trust. I felt so lost, and so was he.
Over the next years he and I negotiated a new world like a foreign land.
Through all of it and until my brother's death I depended upon the support of this Forum and was so helped.
We were lucky. Even to the end we were able to discuss changes he was going through, and he never had to descend into the worst of Lewy's as he was "delivered" early (as he hoped to be) by sepsis which claimed his life.
My brother was lucky. He had the best of care. I will forever be profoundly grateful to the DEDICATED caregivers at his ALF who took on the care of elders as a vocation. I cannot say enough good about them.
As a nurse myself I had cared throughout my life for the elderly.
Life is never a matter of clear black or white. It is lived in a grey area we attempt the best we can to negotiate. That's my experience of it, overall.
I DO agree that we often see children who suffered at the hand of abusive parents attempt to take on care of said seniors; these posters often come to us desperate and hopeless. I think for the most part we attempt to advise as best we can.
I am very thankful for this Forum. That's not to say I see here perfection and perfect answers to all of this. In my 81 years I haven't found a whole lot of perfection outside of the perfect geometry of a single snowflake.
The posts are filled with "love and compassion" as the good folks on here try to do what is best for their loved one, and often just need a little guidance.
And most of us "caretakers"(your word not mine)as I call us what we are and that is caregivers, as we give and not take. Sometimes we give too much to the point of losing ourselves along the way along with our health and well being as well.
Plus I would say probably 98% of us are not paid caregivers but family members that are caring for our loved one because we love them and in some cases because of a false sense of obligation.
But regardless I find it quite offensive that you would have the nerve to say to all of us on here that we seem to be focused on ourselves. That is so far from the truth and it pisses me off beyond belief.
Perhaps you need to be the one looking in the mirror, as it may just be you who is focusing on yourself.
It's been my experience that the majority of caregivers put themselves last and that's why so many of them struggle so in finding joy along their caregiving path.
I hope Ricardo takes the time to really learn what he's talking about. For him to render an opinion coming from a place of ignorance on this subject is not helpful.
Two very different situations.
My mom, in a NH, had the right to make choices and direct her caregivers to do what she wanted.
She did NOT have the right to tell me to quit my job and leave my home to care for her.
Do you see the difference?