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He cannot dial or answer phone so I'm struggling to leave at all. Desperately need surgery, but have no one else to b with him. Will have to get outside help soon as really do need surgery his family, is mad because he married me six and half yrs ago we pooled our money and what we have left is mine. Not too big amt. They think he's much better than is. He and first wife cashed in all insurance etc. Cannot imagine treating parent like this. He educated, gave all they had before we married. Actually all with any value. I had no idea that he wiped out savings and all to "put" daughter in business she partied big time and recently quit pretending to b a business and closed. Family does not call or care. He is incontinent as well as on oxygen and has bad dementia. I've decided if I outlive him will b no funeral

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Get him under hospice care; they will provide outlets for you.
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You are not alone, There is respite care at almost all assisted living. They will take care of your loved one for days or weeks at a time which you get away . I looked up one in your area is Gardens - the administrator can help you start there. Write down your questions before you call. Also there is Home Instead Senior Care that will come in possibly for three hours at a time. Call a near by church and see if they know anyone in their church that would come in. If he is weak your doctor can order home health and they will come and see what is needed. Also contact an Elder Attorney to see if there is some help out there that you are eligible for.Most Elder Attorney's do not charge for a consult. Was he or you in the service when we were at war? If so then contact the VA. I am sorry to say but many families do not take care of their parents or those that raised them and provided for them. I hope in some ways this is a small help to you.
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My heart goes out to you! Hospice can be a great help but depends; you need to do lots of inquiring. Hospice in my area sends out one volunteer for one hour a week. It isn't 24/7 care. That happens when you find a hospice facility.
You could at least catch a break hiring hourly home help but it doesn't come cheap. Many listened, bonded companies can come in for as long as you will pay.
Families can get quite ugly about dementia in a family member and also end-of-life circumstances.
Take a deep breath. You need rest so get creative and find a way. Sounds like he cannot be left alone, so get some help.
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You have much more going on than just the need to get away for a few hours. You must be very hurt. You are also in your own prison. I have found that in caretaking I have become codependant. I never wanted to be again. I thought I had moved far past that. You are NOT all that he has. He has children who could step up an dyou may have to insist on it. You cannot put off your own medical needs while caring for his. You need hospice. You need support and there are many support groups. I finally just had to start leaving the house. You might have to make that decision too. God bless you in your journey. Dont let fear control this.
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For short term, I hope you can get the respite mentioned above. Long term, he needs more help than you can provide. Does he qualify for Medicaid? The rules change from state to state, but I'd give them a call and ask someone to talk with you. Here in Iowa, as a community spouse, the house, one vehicle, and $15,000 in assets are protected for you. From what you say, he probably qualifies for nursing home care. It's time to take that first step. I'm so sorry you are going through this, and I'm sure you are frustrated that you are not getting help from his children. Best wishes!
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All advice given is really good...The help is there and as exhausted as you are, please do reach out today...I feel certain he is qualified for Medicaid. Call Social Services in your county to get that ball rolling.

Grace + Peace,
Bob
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Tears came to my eyes when I read your post. Wives of husbands with families from a previous marriage are in a horrible position all the time. But the difficulty escalates when dementia strikes. You must take care of yourself first. You need regular respite care. In the mean time, you need to find out what services he qualifies for. Start with Medicaid. Be persistent. If you fall down, you must pick yourself up again. You must advocate for you and your spouse. Unfortunately, your only reward is likely to know that you did all you could in the best way. I live with someone much only and my heart goes out to you.
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Our healthcare system keeps people alive long and longer, but the Federal government is not able to cope. If you are on Medicaid it's easy to get him in a nursing home with respite care. If you are NOT on Medicaid you have to play the Medicare game...you must keep him hospitalized for four days then Medicare will pay for something like 100 or 110 days in a nursing home (I forgot the exact amount of days) but they must be in the hospital first. Sounds like he can get hospitalized for any number of reasons like "failure to thrive" or whatever the doctor chooses. Once in the hospital, you can have other options like hospice care which Medicare will pay for. Now if he's on Medicaid simply call your doctor and he will be put in a nursing home so you can take care of whatever you need. Medicaid also pays for adult daycare.
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Spouses struggle more than anyone in these situations, and if the person had children, second spouses can have an even harder time. I'm so sorry that you are in this terrible situation.

Please look at placing him in a nursing home. It doesn't sound as if you have a lot in assets, Medicaid has a program that will help you live decently with what you have left and you'd have your life again so that you can have surgery. Your husband would have care and you can visit as often as you are able.

You can find some resources by going to www.aging.gov and finding your state. This will give you a long lists of possible resources. Another option is your Area Agency on Aging. Someone needs to help you find a solution.
Take care of yourself. Your husband won't have anyone if you go down.
Carol
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Oh you have to be poor to get on Medicaid. No more than $2,000 in the bank. If you are poor, it will not be hard to get him on Medicaid -- you can apply online for Medicaid. Believe me the government knows what is in your bank account and how it is spent. Apply for Medicaid if you don't have much in the bank. You can do that yourself. If he gets on it just call your doctor and respite care is possible, or even adult daycare. If you are on Medicaid get food stamps. Every bit helps!
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My heart goes out to you. Everything you write, plus more, is occurring here as I care for my husband. The last thing I need to hear is more of a load - if something happens to me, who will care for my husband? Because of dementia, I imagine his friends have stopped coming by or calling. I wouldn't worry about the phone - hopefully you have an answering machine, and can put both phone on silent ringer, and answering machine on low so it is quiet, and let it serve its purpose. If there is a friend of his you could ask to come and stay for an hour, it becomes a start. Be sure to be back 5 mins. earlier than you promised. That's just for starters. I agree with all above that state aging services will be helpful. You do not need to go physically to them. They have volunteers who know all sorts of ways to go forward, and they will come and visit with you at home. Forget the stepkids and their lack of involvement. That will be their problem with their later lives, and with God. When I wake up, it's easy now to tell if it's going to be a 'frontal lobe' day. Some days that aren't give a little more peace, but not enough to get over being tired. And being tired is deep in the spirit, not only sleep deprived. It can be more manageable as you reach out to the state. Good for you for reaching out here. Please keep us informed about both the good and the bad days. Know you are not alone - there are those of us in the same boat out on those caretaker waters, and I for one solute you.
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I don't know what state you are in , but there is help.
I lost my Mom 1 year ago today. At that time, if you didn't have money to pay for help there wasn't much. However, since then I have found out there is more assistance for dimintia and Alzheimer's patients.
Contact your area Council on Aging. Google ADRC for your state. I just started the process for my MIL who lives with me and has dimintia. She can't be left alone anymore, so I was soooo happy to find out there is help for her and me. God Bless you!
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To get away, you can either leave him alone, get a friend to sit with him, or hire someone to sit with him. If something happens to him if you leave him alone, know you will be held responsible since you are the non-dementia person and principle caregiver. All the other family stuff is a non-issue. Don't bother yourself about insignificant problems with them, and just love him for the time he has.
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My Heart goes out to you. This Web Site is a great source of information and just others to listen and respond to you. I hope by now you have taken some steps to get relief for yourself, if not please do so immediately! You will not last and once you have placed your spouse, you will be able to focus on yourself. I cared for my deceased Dad, & my Mom whom I finally had to place in Nursing home. I am now facing similar circumstances with my own spouse. I have felt many times there just is no light at the end of the tunnel. I too, have had no family to help. Everyone always has something else to do so I just don't bother anymore. Get Help NOW, before you aren't able to go yourself!!! I pray God will send you the answers you need, but you have many on this site. Take Heart, Take Care and I will be thinking of you, as many have said I Promise you, YOU ARE NOT ALONE. Many of us are out here. I am grateful for this site and all who listen and advise.
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Here in NY, the well spouse is allowed to keep $133,000 in assets while the sick spouse gets Medicaid. Note, Medicaid will also pay for respite care in a nursing home, which is medically more appropriate for him than an assisted living. It is 3-30 days and a good opportunity to "try out" the nursing home. I'm so sorry you're going through this.
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I"m so sorry you are experiencing this. There is some great advice offered in the other posts.
I just want to add: Are you sure it wouldn't work to send a very neutral and diplomatic request to his children (maybe in a letter or email so you could address all of them) suggesting/requesting that they rotate taking a weekend day to care for him and spend time with him? Or one evening a week? It could be as simple as one shift a month (if he has 4 children). Perhaps an introduction from his doctor or a social worker describing his needs/condition. It might mean that even if only one of his children agrees, they would have a better understanding of the reality and the challenges of his condition. Ignorance is bliss, and their resentment of his relationship with you might just be an excuse to not really face what is going on with their father. Is there any other 'neutral' friend or family that might help introduce this idea?
All of the above advice is great. I'm just suggesting there might still be a way to bring his children into this picture. I'm also not suggesting that once a week is enough, but it might help you feel you aren't alone in this.
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Have nothing else to contribute. Just wanted to say thanks on behalf of Second123 for the great answers and support - to which I add mine.
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Call visiting angels
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I agree about discussing hospice care with his doctor. After 13 years of caring for my husband (both remarried), hospice paid for 5 days of respite, and our county's aging dept paid for 4 days, making it possible for me to travel to Italy to visit my granddaughter. Also, hospice gives me bereavement counseling. She advises me to completely detach from all the drama of his kids. They have to make their own peace, and job is to look after my own grieving process. Best wishes!
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Second123

I am sure you need a break to recharge your batteries. Have you looked into Respite Care? Cost through community agencies can be little or nothing. Although a break for a few hours might be good, it appears that you could use more like a week.

Have you been diagnosed with depression? This diagnosis is very commonplace with family caregivers. Make an appointment with your doctor to seek information regarding depression.

Now let's talk about how you must take regular breaks from caregiving. The amount of caregivers suffering death or life altering illness is very high. Take a good long look at the loving care you are giving. Now add to this your being suddenly ill. Where does the next caregiver come from?

How can you get a few hours away to get some rest and a break? The answer (at least to me) is, how can you not take a break? Think of this situation - who will be able to give the quality of care expected if I suddenly drop out of the picture. There are astronomical numbers of caregivers requiring help themselves. Or worse yet great numbers of caregivers dying within three years of the person they are caring for. Ask yourself 'is this what my family member I care for want?

I know this sounds like you are only thinking of yourself however just the opposite is true. Take care of yourself to be able to care for her. There is quite possibly friends or professionals in your community that would love to help. They are not aware of what kind of help you need. Asking for help is a positive step in your situation. While asking for help be sure you are ready for the help as it arrives.
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I agree with everything said above. My wife and I married 21 years ago and she was 15 years older than me. Her kids were grown and starting their own families. The age difference never really was never an issue ever......until dementia struck. I am lucky enough to have the money to pay for her and her kids are a tremendous help in caring for her and me at times. Just as my wife was really starting to show the effects of dementia, my dad was in the end stages of Alzheimer's. So, I have been dealing with dementia care for almost 10 years now.

I hate to say it, but it sounds like you need to have a "very frank" discussion with his family ASAP. Pehaps in the office of and Eldercare Attorney. If his condition is as bad as it sounds and a minor emergency occurs I would have him admitted by ambulance to a hospital. While he is there arrange my own surgery and recovery and let the doctors handle it from there. If there is no one to care for him at home the family will have to step up or arrange for care in a nursing home. I know this sounds cold....and it is I guess, but it is time to force the issue and care for yourself.

The one thing I have found to be true is that caregivers almost always neglect themselves a little and sometimes a lot because that is the path of least resistance. It is time for you to change that path and care for yourself.
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please answer if he is a veteran because I have just found out some very disturbing information
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Schedule your surgery right now. That will give a point to work towards. Then, call your husband's doctor. Explain that you can no longer provide the care he needs. Don't assume his doctor is well acquainted with his condition. She or he may be completely oblivious as to how care is currently being provided and how much of it is needed. His doctor must get him admitted to a skilled nursing facility. Once that's done, you can address with the staff of the SNF how to start the ball rolling for Medicaid. It's worth a few hundred dollars to meet with an elder law attorney, just to make sure you don't make any mis-steps in this process. Make sure it's an attorney who will advise you whether or not you agree to pay them to go through the Medicaid application process with you.

You MUST remain firm through all of this that your husband needs more care than you can safely provide. He cannot be discharged from a SNF until there's a plan for care. Don't waste your time on what his children SHOULD be doing or not doing. I'm sure they have their own side to the story (and lots of emotional baggage to go with it), frankly, it just doesn't matter. He needs skilled nursing or assisted living care and you need to help him get it.

If you become desperate, put him in the car and take him to the ER.
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she doesn't tell us what their relative sizes are; what if she couldn't just "put him in the car" if she gets desperate
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I agree, try respite just to give u time to look into other alternatives.
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Getting married later in life...this is something to consider, keep money separate. Women and men need to protect themselves from stepfamilies. Me personnally would not remarry if something happened to my husband.
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Call you local Council On Aging they can direct you to caregivers and respite care, I did that but also used private care, Comfort Keepers places like that. It was a little expensive but was not bad for 4 hours of free time a couple days a month.
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Alabama Connect assists older adults, individuals with disabilities and their family members to locate services they might need as well as other information that might be of interest.
Family Care Navigator, hosted by the Family Caregiver Alliance, is a comprehensive state-by-state searchable data base that provides a list of government and private services and supports for family caregivers and care recipients. .

National Resource Center for Participant Directed Services: If the person with the disability or chronic condition is eligible for Medicaid, they may qualify for financial assistance that can be used to purchase necessary home and community-based services and supports, including payment to the family caregiver or to pay for respite. Such programs are sometimes known as cash & counseling, consumer or participant-directed programs, or other names selected by the state . Check out the Center's program map for a list of programs and contact information.

Easter Seals: Many local affiliates of Easter Seals provide respite, adult day services, and other supports for individuals of all ages and disabilities. To connect to an Easter Seals affiliate in your area, .

Eldercare Locator: A public service of the U.S. Administration on Aging connecting you to services for older adults and their families. You can be reach them at 1-800-677-1116 .

Benefits.gov: The official benefits website of the U.S. government that informs citizens of benefits they may be eligible for and provides information on how to apply for assistance.

Aging and Disability Resource Centers: If you are looking for information or assistance with long term services and supports for yourself or for a friend or family member,
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Stress is a killer! You will become ill if you don't find relief. Respite Care or another form.
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Have had you on my mind, can you give us an update on your situation? Hoping you have taken steps to help yourself and your husband. Keep on Keeping on, God Bless You
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