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Thread: Caring for relatives with Alzheimer's : the modern curse of the elderly

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    Ecuador Avalon Member Rosemarie's Avatar
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    Lightbulb Re: Caring for relatives with Alzheimer's : the modern curse of the elderly

    The long goodbye they call it. My mother had it. We started to glimpse its ugly face around 8 years before my mother died. Very slowly we started to see changes.

    My mother would change the name of things , a jacuzzi was a susuki , she would forget our names, or have the same book for hours in her hands and don’t move a page. In fact I think that was the hardest for me. She , the one that instilled in me the love of books, that read books constantly , was unable to concentrate in even a page, and I started to see the same book on her table day after day after day.

    She started to ask the same questions , over and over again. My brothers had the patience of saints , but they lived in other parts of the city and didn’t see her as often as I. I lived in the same condo and was always going up and down between my home and hers. My patience was less and I would scold her at first. After a while she started talking less and less, would just smile at us , loosing that sparkle in her eyes.

    My mother was one of the most loving person I had ever known. She was a giver , always wanting to nurture you. I, who had lived since I was 17 far from home and done it on my own , when I returned home at 42 with 2 kids 14 and 12 , became the daughter she had lost at 17. I did not think I needed her , but she , in her wisdom knew more than me , and gave me huge amount of love I thought I did not need. I was caring and providing all my kids needs , but she was providing mine.

    Then , as often happens in cases like this , I became the adult , the parent , and she my child. I adored her, and would sit close to her and either talk or read to her. I knew I would never had her back as a whole person but I wanted to soak in her essence as I knew she would soon be gone. It was hard. Sometimes for little moments she mas lucid and did recalled my name and who I was , even mad I was asking that silly question.

    I had the best brothers you can imagen, managing my mother finances , providing for everything , visiting constantly. She was lucky to have the means to provide for herself the best care with nurses around the clock and people that had worked for her for a long time that truly loved her and became her extended family over the years.

    A year before she died , she had a fall and broke her femur. After the operation and physical therapy she was never the same. She could just move around her room from sofa to bed or wheelchair. Never again to go out and Have a drive with any of us for distraction. We would turn the tv on to her favorite sports , tennis and golf. We would visit constantly but just talk between us , she just lost not present. Her soul , hopefully , doing something somewhere else because this earthly body was failing her.

    She had always had a fixation with the care she would need when she got sick. This , I think , came after taking care of my father who had died of pancreatic cancer at 67. She had everything in order and she had a living will. No resuscitation. No feeding tube. It was very hard for my older brother to see my mother start having problems swallowing.

    The night before she died , he had talked with her doctor about putting the tube in. The doctor, having seen my mother's living will told him he would advice against it since he wanted to honor my mothers wishes.
    Thanks God , we did not had that talk with my brother because I would also had oppose it and a fight would had happen.

    Next day , a Sunday , I was up and down our apartments and at 6 pm decided to go and see the Emmys in her room. She was sleeping when I got there, I told the nurse to go and rest and I put my chair next to her bed and held her hand. After and hour I felt her hand getting colder. She was dying while we were holding hands ....,and I never knew it. I think that was her parting gift to me. What an honor to have been with her in her last moments on earth.

    We had started grieving for the absence of the person she was long before her death. Her personality had vanished with her cognitive skills and memory.

    Edit: I have never talked about this. Just wrote that very early in the morning. Lots of things lacking. I might add as I remember more.
    Please forgive my gramatical errors. I did the best I could.
    Last edited by Rosemarie; 6th July 2019 at 03:56.
    "Be kind for everybody is fighting a great battle" Plato

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    Costa Rica Avalon Member ulli's Avatar
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    Default Re: Caring for relatives with Alzheimer's : the modern curse of the elderly

    Thank you for sharing, Rosemarie. Must have been hard for you, reliving those sad memories. But she will send you blessings, for having been a good daughter right until the end.

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    Default Re: Caring for relatives with Alzheimer's : the modern curse of the elderly

    I helped care for my mother in the final couple of months before she entered an extended care facility. She would not allow anybody to help her with personal hygiene issues, so it was time. This tiny person, rail thin from brain disease had so much fight in her. Trying to humanely attend to her basic needs felt like trying to overpower a pro midget wrestler. Damn she was strong.

    Her descent was mercifully rapid. She died three years after it became obvious there was some kind of problem and we opted for a humane tube free death as well. When she began to have extreme problems swallowing, I directed the care aid to quit feeding her as she had a life long fear of suffocation and choking having had whooping cough as a toddler. She also had infections and she had lost the ability to communicate very early on in the course of her disease, so there was no way of knowing if she was suffering and to what extent.

    She left the world with a smile on her face and she looked almost radiant. It was such a relief and one of the happiest moments of my life. I prayed for her death. Nobody should feel guilty for wishing someone in end stage dementia to die. And if part of that desire is related to the fact that it is very difficult and pointless to look after someone past the point where there is any meaning attached to their lives, that's okay too.

    The most callously careless thing a few people said to 'comfort' me, was that my mother was perfectly mentally fit, just locked inside her brain, unable to convey anything to the outside world. They obviously didn't think it through. The torture of being fully aware and trapped inside yourself would be much worse than your brain shutting down, across the board. With severe forms of dementia the mind is gone as well as the ability to communicate. They parallel one another.

    I am preparing now for the possibility that I may experience what my mother went through. I have no children, but I do have proxy children, people I have helped out and who will help me if I need it. I don't want them to look after me, I just want them to hire people who will, and I would like it if they would look after my finances. i have had to live a very orderly life that is as seamless and spare as possible, so far and I don't want that to change. Sounds really boring but I fear like Hell a spiraling down into chaos!

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    Belgium Avalon Member OSIRIS7's Avatar
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    Default Re: Caring for relatives with Alzheimer's : the modern curse of the elderly

    thx for your share , my mom is in a home now and the caretakers r very loving and gentil.
    sometimes i feel guilty to leave her there that is the most heartbreaking , but yet again 15 min later it gone anyway !
    have you seen my brothers ... NOOOOOOO..... any other family member NOOOOOOOOOOO
    then " of my brother came the same day and spent time with here , bying new clothes , having a coffee at the bar .... but when i ask did u ..... NOOOOOOo
    well, maybe it is all part of life we choose to go , before we ended up in this new body

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    United States Avalon Member onawah's Avatar
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    Default Re: Caring for relatives with Alzheimer's : the modern curse of the elderly

    Emerging research underscores the critical need to protect compounded bioidentical hormones. Action Alert!
    Alliance for Natural Health
    12/19/19
    https://anh-usa.org/new-hope-for-alzheimers/

    "Almost six million Americans suffer from Alzheimer’s disease, and it is projected to afflict many more in coming years. Big Pharma has been unable to produce drugs that treat this debilitating disease. New research, however, is suggesting that Alzheimer’s is more complex than previously thought, requiring an individualized approach that can include hormone replacement therapy. Unfortunately, the FDA is poised to eliminate consumer access to compounded, bioidentical hormones. We must continue to voice opposition to a ban on these important treatments.

    Leading the charge on this new approach is Dr. Dale Bredesen (here is a link to his book on Amazon). The prevailing wisdom about Alzheimer’s is that it is caused by buildup of amlyloid plaque in the brain. Drug trials have been targeted at removing these plaques. But according to Dr. Bredesen and his colleagues, this is wrong. Dr. Bredesen has suggested that the buildup of amlyloid plaque is a symptom, rather than the cause of Alzheimer’s.

    Further, Dr. Bredesen thinks there are three forms of Alzheimer’s with at least 36 contributing factors to the disease. Individualized protocols must be developed to address these factors. Dr. Bredesen uses an analogy of a leaky roof with 36 holes to illustrate his approach, where the size of the different holes depends on genetics and environment. Each “hole” will be a different size in each person, meaning some may not need to be addressed while others do. But plugging just one of the holes will not stop the rain from getting in—this is why Big Pharma’s approach fails. One drug may address one of the contributing factors for Alzheimer’s, but the rest of the “holes” remain.

    Dr. Bredesen identifies three types of Alzheimer’s. One type is caused by inflammation; another is caused by a lack hormones and nutrients necessary to maintain brain plasticity; another type is caused by exposure to stress and environmental toxins, like mercury or mycotoxins from mold.

    Hormones are particularly important for addressing the second type of Alzheimer’s disease. Dr. Bredesen writes that estriol, estradiol, and progesterone have brain-protective effects and a “direct effect on the molecular balance that drives Alzheimer’s disease.” Dr. Bredesen says that, “Reaching optimal hormone levels is one of the most effective and most critical parts of [the Bredesen Protocol].”

    Other research has shown that estrogen plays an important role in the brain, including the modulation of synaptogenesis, increased cerebral blood flow, mediation of important neurotransmitters and hormones, anti-inflammatory actions, and antioxidant properties. Dr. Bredesen emphasizes the importance of taking these hormones transvaginally, since oral administration can lead to liver problems—something conventional medicine often misses. He also emphasizes the importance of optimizing testosterone levels to support the brain.

    To restore proper hormone function, Dr. Bredesen recommends bioidentical hormones as opposed to synthetic hormones, as bioidentical hormones are identical to the hormones produced by the human body.

    Note that many of the FDA-approved bioidentical hormone products are taken orally, not vaginally as Dr Bredesen and most integrative doctors recommend, and for estriol there is no FDA-approved product, meaning it must be made at compounding pharmacies. This emphasizes the importance of having compounded bioidentical hormones as an option. Unlike FDA approved hormone drugs, compounded hormones can be customized to a patient’s specific needs: pharmacies can make medicines using doctor-preferred delivery mechanisms (i.e. creams for hormones), allergen-free formulations, and they can personalize dosages. Bioidentical hormones also appear to be safer, particularly estriol.

    As explained above with the leaky roof analogy, the Bredesen Protocol is tailored to the individual and includes cleaning up the diet (cutting out simple carbs and eating more vegetables and fruits); getting enough sleep; exercising regularly; ensuring hormone levels are correct, regular fasting; proper supplementation; and much more. The protocol is individually tailored depending on which “holes” need to be plugged in the leaky roof.

    Using this protocol, Dr. Bredesen has been able to help improve Alzheimer’s in over 200 patients. He is attempting to fundraise for a larger clinical study, but as this isn’t a drug protocol and isn’t a one-size-fits all solution, funding can be difficult to come by.

    Other research has supported the notion that hormones have a role in Alzheimer’s:

    One study found a 12 percent lower risk of dementia for women who had three or more children compared to women who had one child.
    Another study showed that women who begin menstruating earlier and went through menopause later have a lower risk of developing dementia.
    A study of 133 elderly women found that the more months of pregnancy meant a lower risk for developing Alzheimer’s.
    The connection between pregnancy and reduced Alzheimer’s risk further suggests estriol’s role in protecting against the disease, as during pregnancy estriol levels rise significantly—in fact it is the most produced estrogen during that time.

    This promising research gives hope to the millions of Americans who suffer from Alzheimer’s as well as their families and loved ones. It is also a stunning endorsement of integrative medicine that utilizes and individualized approach to treating illness (Dr. Bredesen is a conventionally trained physician who was introduced to integrative medicine by his wife, Dr. Aida Lasheen Bredesen).

    It is a scandal that the FDA is considering a ban on compounded bioidentical hormones like estriol, estradiol, progesterone, and testosterone—medicines that could help Alzheimer’s patients, in addition to the 2.5 million women who rely on these medicines to manage menopause.

    The FDA must continue to hear from the public about the urgent need to retain consumer access to compounded bioidentical hormones.

    Action Alert! Send a message to the FDA and Congress telling them not to ban compounded bioidentical hormones. Please send your message immediately."
    https://anh-usa.org/new-hope-for-alzheimers/
    Each breath a gift...
    _____________

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    United States Avalon Member RunningDeer's Avatar
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    Default Re: Caring for relatives with Alzheimer's : the modern curse of the elderly

    Quote Posted by onawah (here)
    Leading the charge on this new approach is Dr. Dale Bredesen (here is a link to his book on Amazon). The prevailing wisdom about Alzheimer’s is that it is caused by buildup of amlyloid plaque in the brain. Drug trials have been targeted at removing these plaques. But according to Dr. Bredesen and his colleagues, this is wrong. Dr. Bredesen has suggested that the buildup of amlyloid plaque is a symptom, rather than the cause of Alzheimer’s.

    1,095 customer ratings: 4.5 stars out of 5

    * I find it equally beneficial to read the low ratings. Not only for books but for other products on Amazon. I appreciate when customers add photos. And there are times when I'm appreciative of any information no matter what the customers think.




    Summary:
    A groundbreaking plan to prevent and reverse Alzheimer’s Disease that fundamentally changes how we understand cognitive decline.
     
    Everyone knows someone who has survived cancer, but until now no one knows anyone who has survived Alzheimer's Disease. 
     
    In this paradigm shifting book, Dale Bredesen, MD, offers real hope to anyone looking to prevent and even reverse Alzheimer's Disease and cognitive decline.  Revealing that AD is not one condition, as it is currently treated, but three, The End of Alzheimer’s outlines 36 metabolic factors (micronutrients, hormone levels, sleep) that can trigger "downsizing" in the brain. The protocol shows us how to rebalance these factors using lifestyle modifications like taking B12, eliminating gluten, or improving oral hygiene.
     
    The results are impressive. Of the first ten patients on the protocol, nine displayed significant improvement with 3-6 months; since then the protocol has yielded similar results with hundreds more. Now, The End of Alzheimer’s brings new hope to a broad audience of patients, caregivers, physicians, and treatment centers with a fascinating look inside the science and a complete step-by-step plan that fundamentally changes how we treat and even think about AD.

    For more information, including articles and diagrams, please visit Drbredesen.com or mpicognition.com.


    Last edited by RunningDeer; 20th December 2019 at 14:43.

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    Default Re: Caring for relatives with Alzheimer's : the modern curse of the elderly

    Quote Posted by RunningDeer (here)
    The End of Alzheimer’s outlines 36 metabolic factors (micronutrients, hormone levels, sleep) that can trigger "downsizing" in the brain.
    I had notice that Strogen (the hormone basis used in birth control pills), it has no side effects, and helps the brain to create new ways to solve problems, ranging from motor mobility problems to cognitive problems, with a combination of treatments appropriate to each case, which obviously depends a lot on the patient's own effort.

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    Default Re: Caring for relatives with Alzheimer's : the modern curse of the elderly


    (2015)

    Want to bump this extraordinary thread and thank all participants . . . it gives strengths and optimism to people who might have to deal with these experiences in the future.

    Coincidentally I found this author mentioned on another thread, thanks!
    (http://projectavalon.net/forum4/show...=1#post1329356)

    The Gift of Alzheimer‘s

    Maggie La Tourelle, a psychotherapist and healer, documents her evolving relationship with her mother who has Alzheimer’s, interprets what she is saying and gives a moving account of their journey together. It is a multidimensional story that demonstrates the healing power of love and how, by being open and seeking meaning, we can find wisdom in the midst of confusion, and freedom from suffering, and bliss, in other world dimensions.

    This book will change how you perceive Alzheimers and dementia; what you do, and how you do it, enabling wonderful new heart and soul connections.



    (2014)
    Last edited by Iloveyou; 9th February 2020 at 23:18.

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    Default Re: Caring for relatives with Alzheimer's : the modern curse of the elderly

    I care for a Dementia patient. By the end of this year it will be five years. She worked in a health industry as a certified nurse over 30 years and after three years of her retirement, she developed no-point-of-return Dementia at the age of 58. Her older sisters only asked for money contrary to their hear-breaking gestures. (What a pathetic way of living!) I send her to a daycare center run by Catholic Church from Monday to Saturday, she spend 8 hours a day and the center delivers to carer. I stop counting number of visitation to hospitals due to various illness.

    Every three month I go to the hospital and the doctor gives prescription for buying drugs. And each hospital visitation makes me rage and hopeless. Whenever I ask for an alternative Dementia treatment, the doctor said "Unfortunately, we don't have treatment that reverse damaged brain cells. Sorry Sir."

    The condition of permanent care center is a soul torturing place. The care center operates it for maximum profit so they only keep minimal staff, five to ten patients per a nurse for 24 hours. She is early 60s and healthy, active, and playful. If I send her to a permanent care center, I know that they will keep her living as long as they can while torturing her body, soul, and emotion silently, i.e locked in the room, tied on bed's frame, beating and verbal abuse to relive their stress from time to time.

    Once in a while the media reports disturbing accident of a permanent care center, the condition of old people's living. 80 to 90 years elders scream to be killed to the reporters but their voices ignored because of the public sick care system plus religious, traditional belief system about conscious death by citizen's own choice.

    In developed countries the life extension, support technology have advanced a lot. If early 50s or 60s Dementia patient goes to the slaughter house, the house manager either one individual or corporation will have collect $1,500 to $2,000 per month over 30 years easily. It's emerging business that's based on death and sorrow of the collective. Seventy percent of the usage fee of the slaughter house is covered by National Sick Care System.
    In South Korea Dementia patient's age dropped to early 40s. Imagine their 60-70 years of parents send the old kid to the slaughter house because of economical burden in most cases. 40-50 years old children who send their mother or father to the slaughter house, which is typical scenario.

    Dementia patient's carer moves on. But, the explosion rate of Dementia which no freaking research report or discovery of the cause of cancer put the hopeless, fearful physic pain over fifty million Koreans. I was shocked after learning that every two to three household has one Dementia patient.
    Few people that are close to me started to suggest the final departure with her, which is the last option if the alternative/pilot treatment of Dementia would not able to completely stop the drain cell destruction.

    I think Dementia is Pandemic caused by so corrupted, synthetic civilization. Dementia industry will grow big like the cancer industry has done, still doing it blatantly.
    For free society!

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    Default Re: Caring for relatives with Alzheimer's : the modern curse of the elderly

    There is hope but...

    https://www.sciencealert.com/a-man-w...-consciousness
    Quote Meet The Man Who Lives Normally With Damage to 90% of His Brain
    FIONA MACDONALD
    13 JUL 2016

    A French man who lives a relatively normal, healthy life - despite damaging 90 percent of his brain - is causing scientists to rethink what it is from a biological perspective that makes us conscious.
    https://www.dailymail.co.uk/health/a...rmal-life.html
    Quote Doctors are stunned to discover that 60-year-old ex-soldier has lived all his life 'with only HALF a brain'

    The unnamed man from Russia wasn't aware of the 'black hole' in his brain
    The left hemisphere is missing, which is responsible for logic such as maths
    But doctors said all the functions had been taken on by the right side
    It's likely the defect happened during pregnancy and was not spotted in scans
    For free society!

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    Default Re: Caring for relatives with Alzheimer's : the modern curse of the elderly


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    Default Re: Caring for relatives with Alzheimer's : the modern curse of the elderly

    I don't know if my story fits into the thread, but I thank everyone for sharing.

    I worked as a volunteer and then as a caregiver with medical training for people with disabilities, end-stage cancer and Alzheimer's.
    My penultimate professional task in 2013 was for a 96-year-old woman with stage 5 Alzheimer's.
    She was a person with a very interesting professional background, and sometimes, while playing a few children's games, she would stop and tell me quite lucidly and with a lot of details about her life, fascinating stories from the Second World War. I am almost convinced that some of the stories, the family itself did not know, so they remained in my possession.

    I had an extremely fixed 24-hour care program and its development had to go on without interruption, so I slept in the room next to the patient's room. The nights were very, very heavy, because the patient did not sleep more than two hours at night.
    So at night, because the darkness frightened her enormously (although, it was a night light on in her room), not knowing "who she is" / "Where she is and what she is doing there", she normally started looking on someone in the house.
    Of course, I managed to fall asleep only halfway (sometimes only half a minute or maximum 8 min) I heard her and greeted her saying : "Hi Oma!" with the warmest voice and hug possible and she was amazed who I was, sometimes she asked me if I was her daughter and I, approved just to create a comfort.
    But the nights were very interesting, sometimes I read, and in her confusion, she just closed her eyes but did not fall asleep.
    In the morning it was a whole protocol with a complete bathroom, hygiene and cleanliness, but most of all I liked to style her hair, put colorful scarves made of bows and cook her plates with design, everything cut in half, and she doesn't eat anything until I didn't put anything on my plate to eat next to her.
    It was a happy day every day, we had a lot of things to do, to sit on the terrace in the sun to talk, to walk a lot (she was sitting in the handicap cart), to go up the 9 steps and go down, to play, to draw, to iron clothes, to vacuum on the floor, she was very "active" and interested in everything I had to do.
    I found a big notebook of old cake recipes and I challenge her with questions to see if she remembers, sometimes she shows me photos in which she knew what it was about.
    During the day I had to run (omit the colors at the traffic lights, run in front of cars and others at the cashier in the store) for 15 minutes shopping, cycling and coming back.
    I had a mechanical watch and a large (A 4) paper that I left in her hand, and which I had printed "Oma waits 15 minutes.. (and I wrote the time on paper, the time I return)" she was extremely happy to look at watch, it was a game she already knew, and she always waited for me happy and good, because I always arrived at the time written on paper, she trusted the paper.
    Many times she didn't know who I was but she was happy to see what I bought. Many times I had to answer a series of questions that had a serious tone (so I had to tell the truth): "Am I the owner of this house? Is my daughter married?" And I had a lot to tell every time

    On the door of my room it was written on a piece of paper:
    "Oma, Anca is sleeping, please don't bother her", but my door was always open ... I was really worried about this being, it is very tragic to see a man in such a state, especially at the end of life when the wisest conclusions emerge (I learned some)

    Her family did not want to take her to an asylum and I can understand very well why, there, even in the "luxury" ones, the patients were treated with strong sleeping pills and more soothing substances, which is quite unnatural for a rather naturally troubled mind.
    I had the opportunity to take care of "old children" (as I used to call them) because small children, I never had the happy opportunity to experience it, so I thought that the "maternal" experience must be summarized in something and quite by chance I had the opportunity.

    I worked with this old woman for 28 days, but I managed to sleep mostly only in sequences of 6-8 minutes at night. Before this patient, I had 18 days without sleep, with a patient of 192 kg in terminal cancer (died in my arms).
    I had arrived in a very short time, not to care when it is night or day, just my tasks and care for the patient, were very intense experiences for some human beings at the end of the road in a way I can not to forget it.

    But the caregivers' experience is very, very intense, sometimes I had a lot to learn from many tears and compassion, sometimes I stumbled upon an "imaginary bed" somewhere, going between two worlds (due to sleep deprivation), talking about rational things along with reason but without me, I was quite tired, my body could barely help me, I managed to lose almost 16 kg, I was no longer at all "me", and I had to give up everything, because it was too much responsibility and certainly I not managed to complete it, at least not without a little sleep.

    I am sorry for all the patients who do not deserve this disease and especially for those who suffer next to them, both sides really need compassion and dedication!

    Love,
    Anca
    Every human is a question asked to the Spirit of the Universe,again and again,because every human is an endless row of humans and in all humans together dwelling the Great Human Spirit.

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    Scotland Avalon Member greybeard's Avatar
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    Default Re: Caring for relatives with Alzheimer's : the modern curse of the elderly

    My Ex wife and I had a Residential Home for the Elderly for twelve years.
    She is a nurse.
    Most of the residents were psychogeriatric -- confused --Alzheimers.
    It was rewarding but extremely difficult.

    Not going into detail but come the full moon some residents were greatly affected.
    They became like children wanting to go go home to their mothers.
    Very hard to talk them into a calm state.
    We were not allowed to lock the front door and the nightmare was that a resident would go walk about.
    This happened twice and we had to get the Police out -- thankful they were found safe and well.

    With the stress and the Home having to close due to the Government preferring to fund non private sector homes.
    Thousands of good homes in UK had to close, so it ruined our marriage.
    So care in the community was the new norm.
    Residents who has 24 hour care in a safe caring environment which was no longer available had to stay home with minimum professional care and stressed out relative doing their best.
    My heart goes out to them.

    Chris
    Last edited by greybeard; 10th September 2020 at 20:51.
    Be kind to all life, including your own, no matter what!!

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