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Anyone else lose the love, attraction to their spouse as their disease changed them? I have felt like I’m caring for an old man, and am kind, but can’t find any affection or love for him still. You can read my profile for more details, but wondering at times why I stay.

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I would see an elder law attorney and make certain of a separation of assets. I don't know whether I would divorce or not. Let us say you DO? Why would anyone even have to know that you did so? I have to assume you would continue as you are, or would you? Do you want now to walk away?
For me, as long as my husband knew who I was, and as you said, "loves me" and as long as he is in care, I could not walk away. I would want to protect my own assets; I would be utterly DETERMINED to do that with as like you,my partner (we are domestic partners) and I are not married and have always kept separate assets. But I would want to be there for him while he knows me. Matter of "in sickness and in health" (I never took those vows but do "feel" them.
If you are young for your age and you wish another relationship, that's a whole other thing. However, as you just found out, for those of us "of an age" there is no guarantee in relationships that we will remain well or that THEY will remain well.
This is purely a personal decision. I think no one has the right to judge another on their own decision for their own life.
I would consider seeing a therapist to comb out your wishes, feelings, plans for your future. I can't imagine you mean to "walk away". But what else it means for you is complicated; no one can make those decisions for you, and the opinions of a mess of strangers on some Forum won't matter much but to cause further confusion in your mind when what you need is clarity for yourself as much as you can get it, and for your OWN life.
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DILKimba Apr 2022
Excellent response AlvaDeer. I couldn't have said it better myself.
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Thank you for your reply.
Asking this question, not to a “mess of strangers on some forum” but to a group of other caregivers in a more similar situation that may be able to relate to my feelings, than family or friends not in this place.
I can’t imagine what type of person could just walk away, when a spouse becomes ill, although I think many caregivers wish/ long for that escape at times. I wouldn’t be walking away whether married or divorced. My question is more am I living a deceitful relationship or am I sacrificing my own life for his? Which I suspect all caregivers feel. I did see a therapist for awhile, but they seemed to encourage leaving and and taking care of myself, and that wasn’t what felt right to me.
Other part of question - have others lost the connection to their spouse, and feel as though they are caring for an old man, which would not allow it to feel moral/ true to be attracted.
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Myownlife Apr 2022
My situation was a bit different because it was at younger ages.

After my husband and I had been married for 18 years, he was diagnosed with stage 4 melanoma, and died 5 years later, at age 49; I was 44. I had become a nurse to him at the very end. It was awful, we had been best friends and everything to each other since we met at age 15 for me and 21 for him; and I never thought twice about caring for him..... because he was the love of my life.

A year later and I had met and married a man I was deeply in love with; we were "soulmates". But we only knew each other a few months before we married. I was 45, so was he. But I had been so sheltered and naive, and thought all marriages were the same. But it turned out that he was a chronic liar and severely alcoholic and so many other problems which I had not had a clue. I helped him through the next few years, in and out of rehabs, jail (dui's). It was a horrible rollercoaster of a marriage. Finally I realized he was who he was and wasn't going to change, and I finally gathered the courage to divorce and leave... my children from the first marriage had lost a father, was not going to have them lose a mother as well. It was one of the hardest things I have done in my life. I had never stopped loving him, and over the years, I always wanted to drive across state and from a distance, see that he was ok. But I never did, and was notified by his daughter that he passed away a few months ago. I've stayed in touch with his daughter and am amazed at what a wonderful person she is.

That was almost 20 years ago. I spent those next years busying myself with long hours at work and taking care of others (am a nurse), travel assignments, a few dates here and there, but never anything serious. And with all the extra thinking time, I realized I could not take a chance on another relationship, and that I could be really happy alone.

Whystay, I wish you the best in your soul-searching. Whatever you decide needs to be your decision, hopefully, a comfortable one which you can live with. There is really no true right or wrong decision, just one with which you can live. Take care :)
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Every person is the master of his/her environment.
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I'm confused by your question, really. You married a man and had fun for a while. He then got sick, you moved him into Independent Living and are living yourself in a paid off house you both had together while you were married. You lost your love and affection for the man after he got sickly and 'old' and now wonder why you are staying with him, but he's living in an entirely different place than you are. Yet in your profile, you say you are not looking for another relationship; so the question is, why would you NOT stay married to this man?? He's already alone, living by himself in IL, with children who don't visit him and a wife who lives apart from him! You mention going to visit him a few times a week and doing 'small chores', which is nice, so he does get some interaction with you, which must be helpful for him b/c you say he loves you.

You say your DHs finances are 'enough to cover his care for now.' What happens later? If he's still alive and needs more care than his finances will cover? What then? Would you not need to sell the home that's paid off to finance his further care? Is that home not in both of your names? If you were to divorce him now, I would think (hope) that asset would be split and go into a separate account so he could draw from it to pay for his care moving forward. That's very important. Plus, who would be his POA to manage his life FOR him, were you to get divorced?

Marrying later in life as you did brings with it the potential for dramatic health issues such as this. This medical diagnosis could have been yours instead of his, which may have left your husband writing this post instead of you. Would he be writing such a post or would he have been in it for the long haul, do you think? Love often makes huge sacrifices even in the face of ugly medical diagnoses. Love takes over when 'attraction' fades and the ravages of age & disease set in. We overlook attraction and love helps us to feel affection even after the attraction fades away. I'm not sure what 'morals' have to do with attraction, and what that has to do with the price of eggs in a marriage. Marriage is about a whole lot more than attraction. Many times attraction wears off but love STILL remains; if there is no love, THAT is at the core of the matter here, in my opinion.

If you don't have that love for your husband, maybe you're better off leaving him now, but not high & dry. Make certain his future is set financially AND with POAs in place so that someone is looking after him medically and financially. Speak to his children about assuming that role; as he declines further, he'll be unable to pay his bills in managed care and/or make important medical decisions regarding his care (if he's not already there NOW). It's vital he have someone to advocate for him while in managed care. If his children won't take on the POA role, then a Case Manager can be hired, but you or someone else will have to look into that option for him as well.

I wish you the best of luck making a decision that works for both of you here, taking both of your best interests into consideration.
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WhyStay Apr 2022
Your post that stated I wasn’t even a carer is very far from true! You have no idea of the previous year’s experiences caring for my husband at home! His cognitive decline caused him to do reckless things while his physical decline made him struggle to be mobile. I have cleaned up diarrhea and other difficult chores just like the rest. Please don’t sound so judgmental.
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WhyStay
If you decide to stay now, you will probably revisit this idea again in the future. this horrible disease didn’t just happen to him, it also happened to you. I am sorry for each of you.

If I were you I would seek the advice of an elder attorney (CELA certified) and experienced in Medicaid. You mentioned that your husband has enough to support himself “for now” and that you own a home together. You need to find out how you will be affected financially regardless of your decision in order to make the best decision for each of you. I also hope you find a very good therapist. You don’t seem like a person who could easily walk away. That doesn’t mean you should stay married. On some level you will always be attached but good hard financial decisions need to be made that protect you both.
Also what you learn through the attorney and therapist, will help you later with your parents.
Good luck with this hard path and let us know how you are doing.
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You NEED to see an elder law attorney to advise on splitting assets. You have a small amount, according to your profile. Many states would say that small amount is half his, his is half yours. If it happens he runs out of assets and needs Medicaid then your assets will be tapped. Even if You have a prenup, Medicaid does not recognize them. They simply don't care if the two of you agreed what is yours is yours, and what is his is his.

For your future financial security you need a consult with a certified elder law attorney well trained and experienced in Medicaid in your state.

https://nelf.org/search/custom.asp?id=5427

https://www.naela.org
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Whystay, personally, I believe that love is actions, not words or feelings.

That you are there for your husband and you do what you can, as often as you can and believe that divorce would be harder on him, tells me you do love this man, you just don't desire him. Which is completely normal. Who can even consider normal relationship activity when dealing with incontinence, it really does change everything.

He is blessed to have you and your care.

I would recommend a consultation with a certified elder law attorney to make sure you are financially protected and see what type of planning for his and your future is still available.
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Read your profile. MSA is tough. The situation sounds reasonable to me. I think I would say stay married and expect to be widowed instead of divorced. If someone new should come into your life you could pursue that at any time.
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My husband was 12 years older than me and when he had a massive stroke a year and a half after we were married at the age of 48, and our life as we knew it was turned upside down. He lost his ability to walk, talk, read, write and was paralyzed on his right side. He also couldn't make love any more.
With the help of much therapy he did learn how to walk again with a brace on his leg and with a cane, talk in short simple sentences and words, but never could read or write nor use his right arm/hand. His ability to make love never returned which was hard on me of course, but we adjusted to our "new normal."
I discovered in time that love is not a feeling, but a choice, and I chose to stand by my man when he needed me the most. My wedding vows "in sickness and health, till death do you part" I took very seriously.
I remember having friends and even acquaintances ask me why didn't I just leave, as if they thought that would have been better for me. But I had made my choice to love my husband until the very end. And that end came in Sept 2020, after 26 years of marriage,(and many health issues)when God took him Home to be with Him.
Was it easy? That would be a BIG NO! But would I do it all over again if I had the choice? That would be a BIG YES! It's amazing what we can do with God's help for those we choose to love.

So it sounds like you are now at a crossroads in your marriage, and I guess I will just ask you.....will you make the choice to love him despite the circumstances or have you already made your choice to leave him and just wanted permission from us strangers to do so? Only you know what is best for you and what choice you can live with.
I pray that God will give you wisdom and discernment in this life changing decision.
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southiebella Apr 2022
You are absolutely correct. Love is a verb. It's an action.
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Good Morning,

I've lived for many years in an apartment complex where many couples met and re-married usually after a divorce. Sometimes their next door neighbor. These were people of means. Oftentimes the man was older and very successful. It starts out honey, poopy and sweetie. Captain's night on the cruise ship--photos, winter in Florida, eating out a lot at restaurants, etc. A nice life. Usually not the same as the first marriage which usually means dirty diapers, mouthy teenagers, braces for their teeth and college costs. When I first moved there all the men would tell me their ex-wife was nuts. I was young and believed them at first but after I while I thought there can't be that many nutty women around town. (I'm trying to make everyone laugh).

The second time around in what I have witnessed usually has a shelf life. The history is not there especially during the lean years starting out with the first marriage. If you marry an older man chances are this is going to happen or sometimes young people get sick too. No one dies in birth order.

You probably feel now that your marriage is a caregiver/patient relationship and not someone you can sit and discuss, play cards, etc. If you leave and meet someone else and this happens again, would you leave again?

Also, what if you get sick. These things are complicated. At the beginning everyone brings something to the table. But when the dust settles "life happens". This is part of life. I think it's easier to walk away when you don't have a history. On the other hand, vows and until death do us part basically the decision is made for you. "Honor thy Mother and Father so that you will live a long life". Depends on your belief system.

Most people seek happiness in life but it's really "purpose" in life that keeps us/me going.

Amen...
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People stay for a variety of reasons.
Some stay because financially it would be devastating. The insurance one has is better than the others. The retirement savings one has that the other does not.

Some divorce because it would enable one to get help that might not be possible if they were married.

Some stay because of what others would say if they left a spouse that was ill.
This is why you will often see questions that one asks if it is wrong to get involved with someone because their spouse is in Memory Care, or Skilled Nursing facility.

What you do is your choice. You are the one that looks in the mirror every morning and must face yourself with the decisions that you have made.
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One of the most difficult parts of marriage is honoring our vows. (Been there done that.)

However without those vows, all we have is a convenient association or arrangement. The promises/vows that we make when we are wed to the other person include "for worse" ...and well, no one wants that......and "for poorer"....and who wants to be poor?......and "in sickness"....and no one wants that either.

But in the end, it's those vows - the promise to stay no matter what (adultery and abandonment excepted) that should keep us from jumping ship when things get difficult.

Peace.
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Your profile says you have no interest in having another relationship. Would you benefit in any way from getting a divorce? If not, then what reason would there be for you to divorce him? All that would do is hurt your husband. It's not his fault he got sick, or became incontinent, or has memory issues. In fact, I'd say that you had a pretty easy transition with your husband accepting homecare then him moving into a care community and actually being agreeable to it and going.
So many families are dealing with a "stubborn senior" who will not accept homecare services let alone even entertain the possibility of moving into a senior care community.
I'm not going to give you marriage advice because I myself am twice divorced (though am currently dating my second ex-husband). When my first ex-husband who I married when I was very young got sick and needed help, I helped him for almost a year. He really didn't have anyone. His siblings pretty much had their hands full with the elderly parents and their care needs. At the time I had a full-time job and was married to someone else, but I worked it out.
I helped him for the sake of the love and life I once had with him.
Maybe try thinking of your husband like that. Remember the life and love the two of you had before he was sick. That should be enough to stay. You don't have to actually do any of his hands-on caregiving because he's been placed. You don't have to put in hour after hour of companion care because his dementia gets worse and he can't be left alone. You visit a few days a week and handle financial affairs. If you take a minute and think about it, that's not so bad.
If you wanted a bit of "companionship" yourself there's no reason why you couldn't have that under the circumstances. So long as you have discretion and your husband doesn't know about it.
Don't break a sick man's heart when really there's no need to.
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That is the marriage commitment. We will be in the same situation as well as we get old.

This is temporary.

You can still be committed but having other activities to avoid being absorbed or burn out
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I married an abusive, narcissistic, controlling, manipulating guy when I was very young...i was 19, he was 21. I had grown up with a controlling mom, a dad I didn't see often and a sheltered and naive home. While living with this nut of a husband, we had two wonderful daughters. Years went by and I put up and put up. I left him once and went back only because he was diagnosed with a very rare disease that there is no cure for. I didn't want to go back, but there was no one else to help him. I knew he was going to die and what would my girls think of me to leave him then? I would have felt so guilty but by that time, I'd already fallen out of love with him. I kept telling myself I was doing it for my girls because I knew they loved their dad. I went through 3 years of caregiving with him after caregiving for his parents.
He eventually had to go to the hospital and actually died on my daughter's birthday. I was so mad at him for this, although I knew it was out of his control, But this was typically the kind of things he done and typically i would have to make things right. I had the Dr put him on life support for 4 days because I didn't want to ruin my daughter's birthday for the rest of her life. Then i had life support withdrawn. It truly was one of happiest days of my life. I was free to do as I wished, when I wished and how I wished. This was the beginning of a new life for me and both daughters and I took a train ride, then we went to another country for a small vacation. I must say that it has been 10 years since his death and I've never been happier. As I look back, i know I done the right thing for me to care for this abusive loser. His death was the ultimate punishment for all the broken bones, verbal and emotional abuse I suffered. His friends were brokenhearted because he was such a good friend. He was the type that his behavior toward his friends came across as the good guy. I made new friends and left his broken hearted friends slowly along the way. I would never tell them what a monster he could be if he didn't get his way each and everytime he wanted something. All I can say is i'm free and I'm loving every minute of it. I have no regrets except that I married him but then I wouldn't have my beautiful, kind hearted, caring, loving daughters Do what's in your heart and good luck to you.
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Normally, until death do us part.
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I married my husband at age 23. He was 46. Throughout our life together (40 years of marriage) , we weathered many health challenges affecting both of us. I was diagnosed with MS in my thirties and he survived a serious heart attack at age 52. I became critically I’ll with septicemia as a result of surgical complications - he was at my bedside every day. In the last decade of his life, he developed congestive heart failure. I became his advocate and loving caretaker. Throughout the challenges and health crises, we never lost sight of the person who we married so long ago and honored the sanctity of that love. Images in the mirror change, love evolves and wonderful memories withstand the ravages of time.
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I can't even remember when I stopped liking my husband. I take care of a stranger inside my husband's body. Isn't there a law about bait and switch?

Inspite of financial ruin, mental and emotional devastation to me, the decision to abandon someone who is alone and in need is insupportable to me. And I hate myself for it. I wish to high heaven that I could just go away.

At one of my follow-ups my shoulder surgeon took me aside and said, "I have to tell you that I really admire how and that you take care of your husband. My mother divorced my father when he was diagnosed with AD". I always smile, but not when I looked him dead in the eyes and told him, "I don't blame her. It's a terrible he**".

I met a woman who told me that after some crazy behavior she divorced her husband and thanked her lucky stars that soon afterwards he was diagnosed with AD and escaped that. I thought badly of her at the time, not now.

But stupid me, I think that an even worse he** is how I'd feel if I abandoned my "goiter" (that's how I introduce him). And btw, the way he's become no one but no one would care. Maybe for a week or two but it wears you out fast.

If there is anyway you can take breaks do that. If you can share the work you must do that. If you must go make sure he is taken care of and visit.
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Similar to my life as my husband is 12 years older. Both of us, twice divorced. We met and married 37 years ago. Having been married before, we had enough life experiences to know what we were NOT looking for in a future spouse (superficial) and what we WERE looking for (commitment and a life partner). When my now 84 year old husband began showing symptoms of physical decline about 5 years ago, our roles began changing. He has since been diagnosed with a very rare, systemic and fatal disease (Familial Amyloidosis Polyneuropathy with cardiac involvement.) It has robbed him of his ability to walk and use his hands. He is weak and tired all the time. The walls of his heart are thickening -ever shrinking the chambers that must fill with enough blood to sustain his life, into spaces barely large enough to continue their pumping function. His gastrointestinal system has begun dysfunctioning. His once highly functioning brain is being attacked by misshaped proteins that have caused confusion, an inability to plan and emotional fluctuations. He will most likely die within the next year. In addition to the typical tasks we each have in a partnership, I now must bathe him, help him dress, and physically support him when he is too weak to walk. I have given him suppositories to help move his bowels because the nerves that cause intestinal contraction to move feces have been damaged from the amyloidosis. I lift, assemble, transport, and reassemble the motorized scooter that allows him some independent movement. I have taken on the care and maintenance of our home and our finances...as well as make and manage all his doctor's appointments. So far, without assistance. He no longer is the man I danced with when we were dating...or climbed mountains, or trampled through graveyards tracing our ancestry. But, he is still the man I fell in love with and married. I feel lucky to be able to still have him at home. He still makes me laugh and a hug or a simple kiss shared fills my heart and sustains me. Each of us must make our own journey...in our own way. You are the only one who knows if you have more reasons to end your relationship than you have to stay and if you will have peace with whatever you decide. Blessings and good luck.
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What happened to sickness and in health? Well there's the sickness, unfortunately. I'm not trying to be harsh. It's coming for everyone, sooner or later. You are not alone there. If it's getting to hard to care, can you hire someone to give you enuff of a break on a regular basis? Even for a coffee, aunch, a trip to a book store. Something. Anything.

I think it is more about burnout. The caring is constant and never ending. One basically becomes a servant more than a caregiver. And things that are painfully emotionally, we want to back away from. It's natural. It's normal.

Give yourself a break. Try to still do things you like. You have to take care of yourself. You have to. You must keep up your interests, outside friends and family. It will be hard but you must. I think the world shrinks down to just being a caretaker for us. And that contributes to burnout. And then since we are miserable, we're hard to be around. Our world can shrink.

Try to open your world back up, even for an hour or 2, or phone calls just to say hi, you will feel better. Make sure you are engaging, and ask about others, problems and life. Sometimes we're so intrenched in the loved ones life, that's all we can talk about. Keep that short & brief. Then set it aside. Then ask about them, their problems. It will get your mind off your own. Thinking about someone else. Have a laugh about something. Unfortunately talking about a loved ones problems just makes people back away. They can't do much about an aging persons med issues. And they may feel uncomfortable. You need to keep your friends close. You might have to force a smile today, but it will come back. You can come back. You are more than just a carer. We tend to be shells of out former fun selves.

I also think we want to distance ourselves from the dying person, because it's dang hard to watch them. It's like our psychi is trying to protect us from the pain, and the inevitable death. Sometimes we are so mentally removed and resigned, we can't even cry. The pain has been stuffed down to protect ourselves. We are left with being numb.
Give yourself a break. It is hard. It really is. Good luck. Keep trying to open your world back up. It's hard but you can do it.
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lealonnie1 Apr 2022
Her DH is already living alone, in Independent Living, and she's not doing ANY caregiving for him at ALL! She's hardly a 'servant', she's not even a carer!
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I just skimmed the replies but I think you got your answer. There have been other similar posts, you are not the only one.

You seem comfortable in the situation as it is now. He is doing well where he is. It seems to be working. There may not be the attraction but there is a form of love and respect.
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Second marriage for us, and I married my husband knowing I will someday be his caregiver even though I am older. That day is getting closer, with not-so-good days popping up more often. This train can't be stopped. It isn't difficult to remember that we have had some great years together, and I treat us to those memories often. Not enough years maybe, but wonderful because we were together. I suggest you focus yourself on the best things in your life, past and present, and appreciate them. You have your freedom, your husband still loves you (which is a priceless gift), and you can live life as you need to. Whatever your choice, please be kind and don't do anything you will later regret or feel guilty about. You will need to live with yourself for the rest of your life.
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DementiaHealer Apr 2022
Dear Dr Benshir,

I am a brain health restoration coach and healer. I want you to know that the train of brain disease can be stopped. It can also be reversed unless there is more diseased brain cells than healthy brain cells. The brain as research shows is a regenerative organ. It is connected and managed and regulated by our main regenerative organ, the phenomenal liver, which regulates EVERY system in our body including our CNS. When we focus our efforts on restoring a person's liver, regardless of whether tests say 'the liver is fine', then the brain responds. I have seen this with my own eyes. Our systems are designed for health balance as we age. Our environment gets more toxic by the day, and our liver is struggling to cope as we age. When we give it the right support and focus on reducing and removing the key causative factors that are accumulating within us, as a result of our exposure to our environment and the foods that we eat, the water even that we drink, then we can slowly and gently restore our system back to health, at any age, except the end of life. I have seen it. I have helped people to do this and I continue to do this.

There is hope. We must stop seeking external solutions and work with our human system by providing it with specific 'natural' medicines to restore our health system. We must focus on maintaining and creating health as we age, rather than waiting for neuroscience to find a pharma drug or gene therapy to stop brain disease progression.
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WhyStay: Prayers sent for this most difficult of times.
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DementiaHealer,

For real are you actually trying to tell it to a real doctor? My hat is off to you for having such confidence.
Don't get me wrong I am open-minded to alternative types of medicine and treatments. I myself have been to doctor who specializes in homeopathic medicine. He was an actual MD though. He worked with an actual medical botanist and herbalist (who by the way had a Ph.D in botany and was also an RN).
I think most people are open-minded to alternative medicines and treatments when such things are prescribed by an actual doctor.
A "healer" is usually what people with no medical education call themselves. There is a big difference between homeopathic medicine and what is known as "conspirituality". I'm sure you know what this is. It's the nonsense and conspiracy theories on actual medicine that go around a yoga studio and similar places that are centered around such practices as yoga, tai chi, and meditation.
Don't get me wrong. I love yoga. I do it all the time. I go to a class once a week too. I practice transcendental meditation too and have for years. It helped me to have the patience level I needed to be a caregiver for so many years. I'm not knocking it.
What I am knocking are the people who take meditation or a yoga class, get some essential oils, and purchase a certificate on the internet with a fancy new title then they think they're a "healer" or a "guru" of some kind. They're not.
I hardly think you have the cure to reverse or prevent diseases like Alzheimer's, Lewy Body Dementia, Vascular Dementia, Parkinson's, or any other number of diseases that fall under the category of dementia and cognitive decline.
If you are the one who does have this, I suggest you get yourself over to Sweden right away because surely there's a Nobel Prize in medicine with your name on it. You're the next Dr. Jonas Salk my friend.
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I am in the same situation you describe and I don't have any answers. I try to be patient but I'm at my wits end. I hope we both get some answers soon.
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Because of me taking care of my mom for a third of my life, if/when I get married, when it comes to the marriage vows, I'm gonna be there for just health only. With sickness, she'll have to lean on someone else.

People can go after me, but I want nothing to do with caregiving, no matter who it is.

Btw, I also want healthy kids and healthy in-laws.
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PeggySue2020 Apr 2022
Blickbob, when people get married it’s for sickness and in health. Any future children, especially so.

That doesn’t mean you stay with them forever. There are different ways to help, and that’s on the caregiver, not the recipient.

I hate hearing all this from you, because you are not trapped. Insist on the aides or you will leave. If the aides are too expensive or she won’t cooperate, tell her it’s a home, screw inheritance.
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