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He has begun wandering. I took a leave of absence for 4 wks to find suitable daycare for him. I was able to find a wonderful, affordable memory care place so I could go back to work. He was in the program with the people saying what a wonderful person he is. Over the last week he has been balking when we drive up and he is to get out and go in. We had been telling him that he was not part of the program but a volunteer to help with the program. Not sure what happened as he even said what nice people they were. That was all he ever said about being there. They asked him to come back and he said sure. Today when I dropped him off I was told that they were releasing him from their program. They said that 4 of the ladies complained of improper advances towards them. They also said that they had thought that he was going to have a fight with one of the men in the program. Truly, this conduct is not tolerated, and I get that. So, I have just applied for another LOA from work to try again to find a place for him to go. As you all must know, memory is not his friend. He wants to go home, which would be about 600 miles away, IF his mother or any other part of his family were still alive. He remembers none of it happening. There is really no one here to help me. His son is 600 miles away where Mom used to live. He and my children don't get along, more like gasoline and a lit match, BOOM!
so, here I am trying to hold things together, sort of. I have been reading what you all have expressed and, yeah, that's me too. It is good to know there are others out there. I have one good book The 36 Hour Day, by Nancy L. Mace, M.A. and Peter V. Rabins, M.D, M.P.H that I suggest to anyone. It's given me a lot of insight. I would go to my church for help, but due to Covid it had to close it's doors, so here I am. I am happy for ANY advice you may have. Thanks

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My story is about 5 years ahead of yours in every way, except for me it was my wife. Your husband's wandering, the good start in day care that turned sour because of bad behavior, the wanting to go home, and the hopelessness I felt for not knowing what to do, all bring back memories of a difficult time. Home care didn't work because my wife didn't like having someone else in her house. Day care started well, when my wife, a retired teacher, began helping out with the different projects the others had. It didn't take long before she no longer participated with the group and I was told she couldn't stay. There were several episodes of wandering, one that caused the town's first responders to look for her. Those experiences, along with other unmanageable behaviors, told me I had to find her a new home. As agonizing of a decision that that was, I had to do it.

Frana, you're where I was 5 years ago. His demands have exceeded your ability to properly care for him. His wanting to go home does not reflect a place, it reflects a time in his life that is no longer possible to live. It's great that the 36 Hour Day helped some, but it's time to look for a new home for him now. As tough as it will be, you'll find relief in not worrying about “what's next”. It's always the ODTAA ( one thing after another) syndrome. As Grandma suggests, call the VA if he's a vet. Also call your Area Agency on Aging to get suggestions. But at this point, it's more about your health and sanity. I think you seriously need to consider a MC facility. I wish you well.
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Franakranz Jul 2021
Thank you for your answering. You have helped me greatly, at least in my mind. Thank you again
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Is your husband a Veteran?
If so the VA might be able to help. A lot has changed and new rules now allow a spouse to get paid for caring for the Veteran.
Also depending on where and when he served he/you might be able to get a little help or a LOT of help. It depends on where and when he served.
So if he is a Veteran please contact your local Veterans Assistance Commission and they can help get the information you need.
My Husband was "kicked out" of one Adult Day program and I had to find another. I went to a local facility that has Independent/Assisted and Memory Care and asked if they had a Day Care Program in their MC section. While they did not at the time within a week or two of our meeting they started one. I was able to bring my Husband 3 days a week I dropped him off at 9 and I would pick him up between 4 and 5. It was a locked unit so I had no worries that he would wander. I eventually used the same place when I had to place him for Respite and if I had had to place him I would have chosen that place because he was used to the place and the people. So you might want to check a few MC facilities in your area and ask if they will take him for day care.

I have to add...
I said I would keep my Husband at home. Period. End of statement. I later revised that to
I would keep him home as long as it was safe.
Safe for him for him for me to care for him at home.
and
Safe for me to care for him at home.
If he is wandering it becomes no longer safe for him.
It might get to the point where you will have to consider placing him in Memory Care. If you do this is not a reflection on you, or how you care for him but it becomes an issue of safety. I would same the same if he were to become violent. Or if he were too large for you to care for him transfer, lift, turn or if he tried to resist you in any way that might put you at risk of getting hurt.
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I am so sorry for what you’re going thru. Like sjplegacy, I had to place my husband in care. I thought I would keep him home much longer, but his delusions made that impossible. Mornings would start off great. But as the day wore on, his anxiety and delusions would get worse and worse and by evening he was convinced his first wife was coming home and I needed to leave before she got there. Even in the morning, he thinks we just met and has absolutely no recollection of our 34 years together.

It’s a hard decision to place your loved one in memory care. We cling to the idea that we should care for them just a bit longer, that somehow we can make life better for them if we’re just a little more patient, work a bit harder to entertain them, find the right program, etc. But their brains are broken and we cannot fix them and can’t even do much to make them happy for more than a few moments. Meanwhile, our own health suffers.

Weirdly, since moving to a home 6 months ago, my husband knows he’s married to me almost all the time. This is helpful because reminding him he’s already married relieves the anxiety he experiences when he’s convinced he’s proposed to another imaginary woman and then wants out of the bargain. He’s thrilled to know marrying them wouldn’t be legal so he’s off the hook.

He’s happy every morning and anxious and unhappy every night. As several friends pointed out when I contemplated bringing him home because he was so unhappy there in the evening, he was unhappy at home, now he’s unhappy there. All that’s changed for him is geography. It’s a hard thing to acknowledge that I can’t fix that. My own health and outlook has improved immeasurably since I moved him. It may be time for you to consider memory care for your husband.
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JColl7 Jul 2021
I understand and agree with everything you stated. I too had to place my husband in memory care, earlier than I thought. I still feel like I could have kept him home just “a little bit” longer. But he had started wandering and was up days on end without sleep. He was delusional and kept thinking he had to go find his children, whom he thought were 9 or 10 years old but were in fact in their 40’s. Sometimes he would get a far-away look in his eyes that actually scared me. He is receiving excellent care now and our visits are wonderful. We can enjoy each other’s company, stress-free for me. Whenever I think I want to bring him home, my family and friends remind me of what I was going through, then I accept the reality that he is safe and well-cared for where he is.
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It sounds like it's time for you to place him permanently in a memory care facility, and not just an adult daycare, as you know things with him will only continue to get worse. That way he will receive the care he needs and requires, and you can continue to work and visit him when possible and just be his wife.
And though your church has closed its doors, there are many still out there and open, so I hope you will find another church that can stand by you during this difficult time. Wishing you the best.
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Franakranz Jul 2021
Thanks for answering, I am searching for another church family to join, haven't found it yet but still looking.
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As others are daying, it is time to find full time placement for your husband. Day care is no longer sufficient.
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Franakranz Jul 2021
Thanks for answering. Yeah, I actually agree, now how do I pay for it, they all want more than I make.
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The bottom line is that you have to make a hard choice. With Alzheimer’s Disease and Dementia nothing ever gets better; it just gets worse. It is only question how soon and how fast. Either you stay home to take of your husband, hire a caregiver to supervise him while your away, or place him in a NH. Plan for your future now, before other circumstances make the choice for you.
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Franakranz Jul 2021
Thanks for answering. Hard choices are getting easier, unfortunately, but paying ($$) for the hard choices is becoming even harder. I know there are others out there that can't/couldn't afford placement and that they are having a hard time too. It's good to know I am having a problem that many have had or are going thru right now. Thanks again
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I doubt the VA will pay you what you are making on ur job. And the VA does not work fast.

I think you need to place your DH in a MC or LTC whatever u can afford. I would see a lawyer (well versed in Medicaid) about getting your assets split. Medicaid allows for this. Your husbands split gets spent down and then Medicaid can be applied for. You will become the Community Spouse staying in the home and having a car. Usually the monthly income, SS and pensions, are split so the Community Spouse gets enough to live on but you work so not sure how that will work. But at least you have secured your share of the assets.

If your husband was in the service during Wartime, the VA does have an Aids and Attendance pension to help with care. This pension would help in offsetting some of the cost of a MC. Your County should have a VA office.

So sorry you are going thru and this is a hard decision. But by placing him, you can go to work every day knowing he is safe and cared for. Not this trying to find a daycare only to have to keep finding another. Maybe eventually having to quit your job only to end up feeling resentful.

This is a horrible desease. When the vows "in sickness and health" were written people didn't live to be 86. Life was so much different. Now, it takes 2 incomes to live. It takes a village to care for someone with Dementia. One person cannot do it all. So, place your DH. Let professions care for him. You can still be there for him. Better that he sees you as the smiling face that comes to see him than the person who is always tired and maybe resentful. Looses patience. It ends up being a 24/7 job.
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You may need to contact an elder law attorney who can help your husband qualify for Medicaid coverage if you need to place him someplace. As you mentioned you do not have long term care insurance and you are fearful of “losing the farm” and his pension. Nowadays, the community spouse is not left destitute. Maybe at least, get a free consultation from such a lawyer before assuming you can’t get help.
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If your husband is 86 and you are still working, there must be a huge age gap between the two of you.  It caught my attention because I will be dealing with the same thing soon.  I am currently managing my mother with dementia, but I know my husband is not far behind.

If your husband can't be left alone, you really only have a couple of options.  Quit your job and stay with him is option 1.  If you can't quit your job or don't want to, then you will have to bring someone in to stay with him throughout the day while you're gone or you will have to place him somewhere.

It's not uncommon for those with dementia to exhibit "hyper-sexual" behavior...which would explain the unwanted advances to the ladies.  You don't mention the type of dementia he has...Lewy Body is known to show aggressive behavior. 

It is very difficult to manage the care of someone while working.  I wish you the best.
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Franakranz Jul 2021
Thanks for answering. Yeah he is 14 yrs older than me. I'm not sure how many working yrs I have left. Thanks again
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Been there and done all of this with my father 9 years ago. It was fine at first. He had dementia but with the little experience I had of it I was totally unprepared for what was to come. It all came gradually...one thing after another. He took great care of my invalid mother who passed so I knew when it was going to be his turn he deserved one of his children to do the same for him....and that was going to be me. You can just imagine the hesitancy I had when it eventually became intolerable to handle his behavior. Like you and everyone else...it's a heartbreaking decision that we don't want to make but for our own safety and sanity and their safety, it has to be made. I spend 3 years dealing with his slow decline till it started to speed up. I became afraid of him and locked my bedroom door every night due to his aggression and his delusions. So sad to see your father in such a helpless mental state. I finally admitted him to a nursing home. His behavior there was so out of control that they told me I had to move him to a facility that could deal with dementia patients better.....ugh! He passed away from heart failure before that transfer could happen. I think the stress of his condition was a factor. It was bitter sweet because I was somehow relieved that he was out of his misery.....because he knew something was wrong with him. He begged me to help him. I was lost and helpless as to how. Please do yourself and him a favor and find him a safe place to live and be cared for. You can monitor his daily life but you don't have to kill yourself doing it. Bless you and him and I wish you all the best
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