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I read a lot of posts by women who are at the end of their rope taking care of spouses who are difficult to take care of. I wonder what keeps them motivated taking care of someone who has a host of behavioral issues.

I have not had an easy life, and I learned many things too late but now I am much wiser. There are several issues one needs to think about. First of all, is the condition of the patient causing a great deal of negativity for you, your family, your lifestyle, etc. Are they mean, abusive, impossible to handle with all of the related problems? How are you holding up? Do you want to take care of them or are you so stressed out you can't take it any longer? What are the financial situations? You must face something - you may love the patient but they are not and never again will be what you once loved - they are, in essence, gone. No one can make these decisions for you. But, I offer this advice. If the care is doing you great harm physically, mentally, emotionally - then it will eventually destroy YOU and in order for this not to happen, you must consider putting them somewhere so you can lead a normal life. You should not feel guilt because YOU want to live, and you deserve to live. Get help from agencies and the professionals who have experience in these matters and get all the information you can gather. Then make your decision and don't let others influence you - you are trying to save your life while you still have it. Don't allow anyone to destroy you. At this point, you come first. You are not doing anything wrong.
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Pandabear Mar 1, 2019
So true. Good advice
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I understand how frustrating and overwhelming it can get. We had been married for 45 years. My husband was the most loving, gentle, funny, selfless, and considerate man I've known. He was sick for 7 years, the last two were really bad. At first I would get angry, thinking he was purposely acting "stupid." But then I realized that the liver disease was affecting his brain and he couldn't help it. I had always deeply loved my husband, and now I was beginning to love him in a deeper, never before known "level." I feel ashamed now for getting frustrated and angry with him. I would never have abandoned my husband. Never having children, I didn't know I had it in me to tend to him as I did...but the love took over and I didn't mind. It was the hardest thing for me to see him suffer so much. I'm so thankful God gave me the grace to be the wife I promised to be when we said our vows. I feel so blessed to have shared my life with this man to his very end. Please know that when they have a disease, they are not in their normal state of mind. They don't mean what they say or do. It may hurt, but don't take it personally. Just continue to love them. It was such an honor to give my all to my husband of 45 years. He's at peace now, no more suffering...but I'm at peace, too, knowing I loved him with all my heart and that I did my best.
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Teresa914 Feb 25, 2019
Your love for him got you through the difficult times.
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Well, here is a perhaps cold but practical advise for everyone out there about to go on a long Carers journey. Get divorced. Do it together while the person who will need care still is cabable of making rational decisions
That way the care expenses only comes out of their assets and income and, having less opens up a lot more government paid services. You keep all your money for your needs and old age
you can still live under the same roof and still get their POA to make sure the right decisions and care is given to them. Use the system to both your advantages
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JoAnn29 Feb 25, 2019
I don't think this is cold. Its becoming a reality. More woman have joined the workforce in the last 50 yrs. Why shouldn't they protect what they have worked for.
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Dear demstress,
I am writing from the unusual perspective of the patient. Three years ago I was diagnosed with Early onset ALZ at the age of 56. My DW and I had just begun the process of putting together a futures Estate Plan which we did. We have two sons in college and a 12yr old daughter that has special needs. The Estate Attorney brought up the possibility of divorcing to help shelter the estate in a Trust for my DW. She mentioned that was what her parents had to do, for all the unknown reasons, ie. how long does the patient have to live. Answer who knows. We decided not to go the route of divorce, and play the chances of moving all the property out of my name and in to a Living Trust for my DW, and getting beyond the look back period of 5 yrs, hoping I won't have to be committed to MC before the clock runs out. We do have some funding for my care that was left in my name, but once that runs out she'll not have to worry about surrendering all we've spent the last 25 yrs. building.
My focus, is getting beyond the next 2.5 yrs so my DW is financially safe. Needless to say, I adore her. Now I spend all my time doing what I can around the house, a few errands, I can do each day, and enjoy the time we still have enjoying each others company. My DW has told me she understands, and will honor my wishes. I am a very lucky guy.
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Lymie61 Feb 25, 2019
<3 (:
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Why divorce when you can relieve the burden of care by using a facility? I'm not talking about somebody who has been an a**hole all their life, in that case I would wonder why you've stuck it out so long.
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I don’t want to answer this question lightly, because we all know how challenging and lonely the life of a caregiver can be. I’m putting aside the commitment a married couple has towards one another, “..for better or for worse, in health and in sickness..”, putting aside too religion, moral, expectations from society (which are the least important); putting aside everything, I’m left with one single question:

How could a person that truly loves his or her spouse, who has lived with this person for a number of years, who has built a life with this person, who -before the illness- couldn’t conceive life without him or her...How can a person want to leave his/her partner behind to continue life being set free?

And can you really feel free and at peace if you choose this path?

There is no judgement hidden or implied in my question, the question comes simply from my true inability to understand how can a person leave behind someone they love. I know I could never do it, not even if I tried.
The only answer I can find is that there is no love, rather, there was never love.
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smeshque Feb 26, 2019
The only answer you gave would also be my conclusion, there was never love. So sad isn't it? Because true love would never allow a person to do that.
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A lot of answers here were based off of the OP question. There was no personal information provided with the question, just a question.
A lot of responses came where people shared their own journey.
Some responses were based of of the question itself and directed at no one in particular.
However, it seems that those who do not agree with another's opinion is deemed judgmental.
When in fact it was a matter of what would you do in this case, sort of thing.
This forum is about sharing of ideas and each ones journey if they want to share. Everyone does not have to agree. But it always seems if someone gives their own opinion and the majority do not like it, then they get attacked and are told not to judge, when in fact no judgement has been placed except by those who oppose someones opinion.
One may think it is okay to leave a loved one if they change or become different and that person has their right to believe that and act upon it. And one may believe under no circumstance is it ok to do such a thing, and they have a right to believe that. But no one has judged anyone here and should not be accused of such because they state their views on the subject.matter.
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Rosses003 Feb 27, 2019
Very true Smeshque. The beauty of this space is that we all can share our honest opinions and also receive honest opinions. I’m convinced that we can get help and enlightenment from all answers. Opinions are opinions, not judgement.
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That's an interesting question. Pops doesn't have Alzheimer's but his TBI, PBA, Epilepsy and Severe Cognitive impairment have, at times, pushed me to the brink. When he became violent on the regular divorce was on the table. Thankfully we've managed to find the right combination of medications to make caring for him simpler, stop the violence, and even have fun. In all the years I've been caring for him my impression is that society only allows me a couple of choices that are considered socially acceptable. Few people I speak with will admit to the truth of this out loud, but those of us who chose another path have felt the burn of a societal norm ignored.
1.) The society I know silently demands that I be the sainted, long-suffering, sacrificially loving wife. Tenderly brushing aside any abuse he heaps on me, sacrificing every moment of my life and health on the alter of "death do us part". Every moment of every day I live is to be spent patiently ministering to his every need 24/7 till one of us is dead. I am to be happy, oh so happy that I am honored by this chance to prove my undying love. Anytime I feel a negative emotion I am to remember how much harder he has it and should immediately feel shamed and guilty.
2.) This society I know will begrudgingly allow me to be the tragically weak but well-intentioned wife. The one who has tried and desperately desires to be the sainted wife above, but is weak and simply can't physically, emotionally and/or psychologically handle it. I can carefully select a care home to place my spouse in. Visit him every day, and by doing so, I win a bit of my freedom while avoiding "the shame". There will still be whispers, shaking of heads and a tsk tsk here and there. Society will, however, eventually forgive me my weakness. After an appropriate amount of time I can even divorce him and move on with my life. It being "understandable" since I'm not a strong woman and "so young" and did "all I could" for him.

To do anything else is to set oneself up to be smacked with the "Selfish, Disloyal, Traitor" label. Yes, many women and men consider divorcing and leaving their cognitively impaired or severely disabled spouse at one time or another. I know, because many of them have told me so, in secret. Few of them will admit so out loud.

What keeps me motivated to stay and care for pops is the choice I have made to live my own life while also caring for him. Society may hate me for "breaking all the rules", but it's working well for us and we're having as much fun as possible with the life we have been dealt. He is happy, I am happy. If it ever comes to a point that I can no longer make his life better by being in it. Then I will walk away and leave his care to others better able to do it. In the mean time I will keep breaking the rules and calling out those in my circle who try to shame me with impossible standards.
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Rosses003 Feb 25, 2019
May I ask what you mean by ‘breaking the rules’?
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I believe that a person must try all avenues before divorce, especially divorcing a sick person. Kicking someone to the curb because that person no longer serves your purpose is pretty cruel. That being said, if you really have exhausted all alternatives, perhaps it must be done.

I would like to add this comment: Several people have answered this post with "put all assets into a trust so that the government pays when the time comes." Do those of you who plan to go on government welfare despite having assets available understand that you are moving your burden onto our shoulders? This is not moral or ethical. Welfare is meant to be a safety net for those who cannot get help any other way. When you take advantage of the system, you are shorting those truly in need. You also burden young families, people trying to put their kids through college, and other seniors who have their own burdens. Please have some integrity despite your difficulties.
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Clarise1 Feb 25, 2019
Amen!
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LOL I care for a partner with dementia, 1 word that most will not be brave enough to speak aloud, but I will. MONEY!

Many wives/partners are not financially able to suddenly be on their own.

Also, in my case, legal documentation stating that he wishes to stay home till the very end, and I will do my best to honor that. But I hope its hospice dealing with him at the end and not me, I will be on the other side of the house.
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Pandabear Mar 1, 2019
So true. Can the wish to be kept at home till the end be valid once that person cognitive capability no longer exists. Surely you can’t be made to honour that. It’s absurd.
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