My husband was diagnosed in mid 50s. Over the last twelve years everything has fallen to me. I’m still working, just turned 65. Love my job, make a good income which is needed to pay for care.

He is volatile, sundowns, is completely negative, has pushed everyone away from us and I’m exhausted.

The constant stress and negativity is draining me and it is becoming harder and harder to cope. Everyday is a screaming match.

He refuses to cooperate on anything, including eating.

I feel like im being robbed of my life, having fun, enjoying myself and really struggle with loneliness.

Anyone have experience with building a life outside of the caregiving that helps meet your personal need for companionship, good discussion, some happiness and not still managing to care for your loved one.

I can only say for nearly three years I had no life outside of my wife. That means NO ONE to talk to other than the occasional visiting nurse or therapist. I did not even go outside to do anything for fear of her being alone and unsupervised.
No she is gone and I am wanting to start a life at 71. I think after all is done with settling her estate I will look into preplanned funerals.
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Reply to OldSailor

So sorry that you are experiencing this pain. I don’t have answers but I offer my support. Mega hugs to you. I hope you will reach out to others and find peace and happiness.

I do become concerned about my mom developing dimentia because she has Parkinson’s and I know some Parkinson’s patients do suffer with dementia as well.
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Reply to NeedHelpWithMom

I know how you feel. Up until the other day, I had been taking care of my 83-year-old mother with dementia. I had done that for two years by myself, because there was no one else that could do it. All of my siblings have full-time jobs, and families, and most of them were married and had families. So since I had never moved out of the house, I had to take care of my mother alone for two years straight! I had to put up with unbelievably bad behavior from my mother. I never got any rest! I had to clean up after her, take her for walks, make sure she get fed at regular times, give her her meds and talk to her when she was lonely. I never got to date anyone, or go out and see friends. I couldn’t go out to lunch myself at at a restaurant, without taking her along. On top of that, I had to wake up all hours of the night, because she was havenightmares and/or because she got
hungry all the time, and wanted to eat something. So I often had to cook her something at odd hours. I had to quit my job that I was at for 25 years. I lost all my friends, and had no social life. My point is that eventually, you will have to get him care somewhere, In the form of an assisted living facility or nursing home.
Or you may have to hire a caretaker to come in and take care of him. Because trying to do it all yourself will age you quickly, and may end your life prematurely. I know from experience.
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Reply to Catfanatic

I do have a good friend who managed this, but not on her own and not at home for the last few years of her (beloved) husband's life. She was a senior teacher, she had three children and later two grand babies as well, a very busy social life and a cuddly black spaniel cross. I'm not sure she got to sit down for about ten years.

You say a facility would bankrupt you. Are you sure? Have you done all the research and all the adding up?

Bear in mind that not all facilities are equal, and that your husband's dementia is not typical. Availability is patchy but there are specialist providers of dementia care who might transform your and your husband's quality of life. It's got to be worth a second look, hasn't it?
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Reply to Countrymouse

This sounds like a carbon copy of my life. I cope with gaming online, friends online, I do arts and crafts, lock myself in the bathroom and read, lock myself in my bedroom and watch tv (have cams to watch him). And I have learned to say, if you cannot talk to me like I am human (dementia or not) then go away. If it gets really bad, much like a two year old I take away his favorite toy (meaning I unplug the internet which is also his TV for an hour, or put off grocery shopping so he has to eat the not liked all that much food). do lose all your friends. At least you are lucky to get out and have a job and see the real world. I am EXTREMELY lonely for human contact...but there is just no way to find it, except online and that is better than nothing I guess. But I wish I had a friend I could text or at least CALL and cry with and laugh with and exchange stories with. But in situations like these, its impossible to find. And all those that say..oooh go to a meet up, a church etc. ohhh just hire someone (that are usually not dependable, stupid or highly overpriced) or oooh just put them in adult day care (no way mine would would be kicking and screaming and by force and I do believe force is illegal) have not lived this sort of care-giving life.
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Reply to Cherrysoda

If you are paying for a caregiver for him while you are at work and then dealing with him when you get home, oy vey, who wouldn't be worn to a nub.

Have you consider putting him in a daycare program and then having an aid for the evenings? Obviously, something has to give or he may out live you.

I hope you find a way that makes you feel like life is worth living for you and not just to care for your husband. It is hard to be so young and have lost so much. He is blessed to have you and you are pretty awesome for caring enough to be there for him. Hugs!
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Reply to Isthisrealyreal

Yeah, it's very hard to have a life when you're trying to care for an elderly parent. My mom wants me with her all the time. I'm lucky to have friends who are understanding. They try to make include me in things even if I can't go. I belong to a very small but close knit church. I'm going on respite next week and I plan on making the most of it and having fun. My mom will be taken care of at the nursing facility.
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Reply to Teresa914
Isthisrealyreal Mar 31, 2019
It's her husband.
JeanneZ I am sorry you're going through this and have been since your husband was 50. I'm dealing with a lot of the same things you describe. It didnt start with him that early but I recognized early symptoms about 10 years ago. He will soon be 77. I am retired though and not still trying to work. I've already been through this horrible thing that Alzheimer's does to a person with my mom. She died in 2014 when my husband was first actually diagnosed. By then he was well into Alzheimer's because he wouldn't go to a doctor for a long time.

He also sundowns, can be very abusive verbally and can be threatening at times. He also has begun to wander, therefore, it isn't safe to leave him alone. His family has only helped when it was a have to situation. They seldom visit nor do friends. He is physically able but not mentally. It seems like practically everything is gone. He still eats good, maybe too good, as I find him getting into anything and everything during the nighttime hours. It is so difficult dealing with all of this.

I too feel like I have no life. I do have my family that I can talk to which helps. Just having someone to talk out frustrations helps.

I'm looking into applying for Medicaid. I've found very little in home help and practically no help from his rather large family. At this point, I feel like I have to try to get him in a nursing home as I feel he may out last me especially if I have to go on like I have been caring for him. I
don't want to do this either but I don't even want to think of spending the rest of my life like it is.

Hopefully I'm doing the right thing for both of us. I've prayed about it and if its Gods will it will work out. If it doesn't I'll continue to look to him for guidance and strength to carry on. I pray the same for you and hope you have family that you can talk with. For me, my sister is especially my best listener and we talk by phone most every day.

I also pray for a cure for Alzheimer's. So many are faced with this. It is sad that more isn't being done not just to prolong but to prevent it!
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Reply to Sharonheart1942

I know exactly the feeling. For me real conversations happened only at work, but they they were not with my best friends, so not in depth enough. Most likely you have already looked into elder support facilities in your city. Mine has an almost free day care next door to the hospital and a great senior center, but you must be having someone help already when you are at work? And since you "make good income", spend more on care for your husband and activities outside of the care giving for yourself. Maybe make a ritual of staying after work to meet a friend for something fun or intellectually challenging at least once a week. For me it turned out that only 3 of my friends hung in there through the worst. They listened about the care giving, but thankfully were able to turn my attention to other topics so we could enjoy each other's company and do the things we had always done together. I suggest you start by letting one of your friends know how you feel, or if that seems too needy, simply reach out and let someone know you want to be with them more often, that you miss them.
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Reply to ArtistDaughter
NeedHelpWithMom Apr 5, 2019
Good reply.
Thank you all for your feedback. Elder care lawyer seen, all legal work complete. Husbands behavior is dementia driven. He has early onset Alzheimer’s, 12 years in. He is 66. A facility would bankrupt us. I’m still working to earn income to make sure I can take care of him.
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Reply to JeanneZ
gladimhere Mar 31, 2019
Did that elder law attorney explain to you how to get hubby on Medicaid so you do not become impoverished? The last thing that the government wants is for you to expend funds that you may need for your care. Then they have two Medicaid recipients instead of one.
Have you met with an elder law attorney to plan so you do not become impoverished after paying for his care? What if something happened to you?
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Reply to gladimhere

I know how you feel. My husband 83 and driving me nuts with his dementia, and his not eating and his behavior. I realized I have no life except maybe a card game once a week. If you put them in a facility you lose your money and your house eventually to pay it back to medicaid. So that is hard to do. I found that everything changes, even your friendships. I have friends in my group that planned a week end trip away and didnt even bother to include me (even for me to say no). They hid the details from me seeing me everyday. And I think we have to look elsewhere for help. I am on wait list for Eldercare for some help. You might benefit from trying any outlet that helps like that. Maybe daycare one afternoon a week will get you to a happier place. We have to find a way to live thru this knwoing that things wont be better for quite a while. And in the meantime you will gain and lose friends and family might help or not. We really are alone on this. Until someone experiences what we experience they will have really no way to know how you are suffering. I keep looking all the time for help. All I have is my house, I cant afford to get an apt. if I lose the house. All I have is ss. I am stuck too. But I am always searhing for help and you should too. And even if you get get out of house for an hour or so it will help.
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Reply to joycee1

You are seeing that you are lonely, never enjoying yourself outside of work, and struggling with permanent negativity and anger – probably both to, as well as from, your husband by now. You shouldn’t be living like this. This may sound harsh, but it sounds as though there are two sensible options. One is for your husband to move into a facility separate from you – a separation without a divorce. You can visit as often as you wish, and perhaps you will both become more loving. The other option is to put this to your husband as what will happen if he doesn’t change his behaviour. Perhaps he can’t change because the dementia is too advance, which brings it back to the first option. But perhaps it will shock him so much that he will be motivated to change. If he doesn’t change, you should, even if it involves selling your house and living in a one bedroom flat. Have a good look at the finances and make it happen if at all possible. Don’t waste another decade like this.
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Reply to MargaretMcKen

Does your husband have bvFTD ? What type of dementia? Do you have children and if so are they living at home still? I ask as that makes a difference in what we might suggest.
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Reply to plum9195
EllerySir Apr 5, 2019
Medicaid is intended by Congress to be equal to private insurance
Our much berated Congress has legislated and developed a wonderful program in Medicaid Title XIX.
XIX was develped for DD population with birth or childhood conditions. Waivers allow those programs to be extended to other populations such as elderly disabled.
I am respecting our government.
Any failure of Medicaid services is the fault of the state administrations.

I had carried premium insurance for many years.
The policy included Long Term Care but it was useless with no diagnosis, no treatment
Christy was not in a facility so there was no billable code.

Under private insurance, nothing was done to seek diagnosis or treatment.

The Medicaid program forces providers to aggressively seek diagnosis and treatments.
Congress wants vulnerable citizens to have the 24/7 care that is needed to keep them out of institutions and in their own homes..

Christy does not comprehend the world.
 I hand feed her cut-up foods and hydrate her with a turkey baster continuously all day.

The most difficult is occupying her.
 TV means nothing. She paces most of the day.

Christy now receives the Congress intended 24/7 attendant care. to keep her home. That is provided by family members working through an agency.

Basically, for Christy's level of care, bvFTD, a facility would cost $300 per day as published to DHS. 24 hour attendant wage is $288 per day.
The intimate care at a home setting saves by fewer health issues, hospitalizations. and allows for the Congress intended quality of life.

Quality of life is a Medicaid mandate that tends to be skirted.

We never had use for substances, drugs, alcohol, tobacco so cannabis was not a consideration, but it has been our salvation since 2013.
It calms the chaos in her brain and stops the seizures immediately.
No more aggression.
It has taken several years to learn the right product and dose, but was are satisfied with the consistent result.
Jeanne, I'm so sorry. I hope others with experience with this will have insights for you.
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Reply to SnoopyLove

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