What should I do next, after putting husband in a home?

I was skyping earlier with my son in Afghanistan... I had not told him all that has been happening in the past 6 months because I did not want him distracted (even tho he is 35 ) He understands better now why his father is in a locked ward and I gave permission for him to stay.. It was a tough conversation back and forth.. He had called the VA hospital earlier (I gave permission for my sons to get all info) and he wanted to know why they admitted him, feeling his father was not that bad.. he had talked to him a few minutes here and there, which always perked my husband up and cheered him up.. So he never had spent any time with him especially the past few months to see the difference.. He has not been able to come since Thanksgiving 2012.. I am worn out now... I told him the most prevalent behaviors that made me wonder about my safety... Thankfully he understands now, but is angry with me for not telling him before... I guess I am too protective of a mother, especially with his being in a war zone..

Way to go , mymares. Little steps. That is what I am doing too. Today hubby looked so good, got my usual kisses, they said he is standing more and eating without help. Good day for me. I wish you the same.

Thank you dirtydimensia01... There is so much more support here than from family members.. I will get to visit my husband next Friday.. They have a caregiver support group meeting at the VA CLC (nursing home) the last Friday of the month... I will bring some comfort things from home.. the DR wants to see how my husband reacts to me after the meeting.. If good, then I can start going more, if not, then maybe a couple more weeks.. I can also bring our dogs in the future, as one has been my husbands baby for the past 14 years.. She is also missing him and he is asking/looking for.. I was a very active outdoor person before.. Today I am getting out. I had a lot of phone calls to make yesterday, cancel appts, etc.. There was a tragic fire next street over the other night with children and the grandmother lost.. There is car wash fundraiser today, will take my car to get a much needed bath..

meatjeanne, I'm thrilled you went out and got some "ME" time. Whom ever that person was that said one word about a pity party, well, there time is a comin'. Rock on, strong woman.

Mymares, I'm sending positive energy and prayers your way. You WILL get through this and finally understand there is no going back only marching forward as best we can and find happiness in the little things in life. I rarely go anywhere so I find things around the house to do that make me happy. I am feeling for you not having your BFF by your side. Please, know you have an honestly, loving support group here. Hugs.

It's hard enough coping with this for a parent. I can't imagine dealing with a spouse in this condition. It's got to be so much harder for you. Mom is in a dementia lock down unit, but there are other patients there whose spouses are still well and living. Some of them live in the independent apartment onsite or the assisted living apartments. That way they can just hop on the elevator and visit. Your facility should have information about support groups so that you can talk to others in your area that are going through the same thing.

Definately contact the VA. Check out veteranaid.org. Their goal is to make sure veterans get the benefits they are qualified for. "The A&A Pension can provide up to $1,758 per month to a veteran, $1,130 per month to a surviving spouse, or $2,085 per month to a couple*." This is a reimbursement program. For instance, my mom has over $4,000 a month in medical expenses, including premiums, medicine and dementia care. So, she qualifies for the maximum spouse reimbursement of $1,130 a month.

You are a very strong person. I admire you for all that you have done for your husband. Alzheimer's is horrendous, my mom has it and I know a little of what you have experienced. As for now, I would suggest finding a support group. You can call the Alzheimer's Association 1-800-272-3900 and they can give you local information. Caregiver support also comes from Leeza's Place. It is very important for you to get support now. Please do not slip into the guilt and rack yourself for not keeping him at home. You did as much as you could and deserve many hugs and "atta-girls" for doing so. Please. Get Caregiver Support ASAP, It is important for you to believe you did everything possible for him. Time for you now.

Jeanne, those are not true friends. You did the right thing, don't feel guilty about anything you have done. Go ahead and cry, it really helps a lot and go on with your plans. Lots of hugs for you.

Thanks blannie...I think a couple weeks I posted on Facebook about having a 'Me Day' and that was when the friend/exfriend now posted about pity parties. Hahaha! I don't have anything to do with the person anymore.

Way to go Meatjeanne!! Glad you had some "me" time yesterday. You deserve it!

MYmares....I feel so bad for you. And I sure understand. Reading your comment, I thought it was me who had written some of that.
I think I was able to lift him (he fell out of bed a couple time, in the bathroom once) because of the job I had until a year ago. It involved lifting, moving heavy boxes. Some were up to 70 pounds. But as I said, it got harder to do...we all age.
Again, thank you so much for your comments, support, suggestions. Yesterday I treated myself to a pedicure, first time EVAH! And spent 4 hours with a GOOD true friend. Was nice to take my mind elsewhere, other than The Home. Again, thank you all.

meatjeanne....I can't even imagine how hard this is for you...I admire you SO VERY MUCH for having been able to care for your precious husband for those seven years at home. I have only been doing this for 2 1/2 years , same physical type situation, but it is already killing me. The physical and mental not to mention the emotional toll it takes and particularly when you have no help. I understand that too...no help but lots of sarcasm and criticism. I had already begun to consider whether it might be better for my Mama if I placed her. I am trying to keep her home, and am working on the respite for a few days to get somewhat of a break, but I just don't know....I believe you have nothing to feel guilty for at all...I can imagine the folks who are critical are just that type of person and have no clue how hard any of this is or has been and never will because those types of folks would never do it in the first place...Take care of yourself. I pray with time you can be able to enjoy your visits with your husband and just know you have done and are donig all you can do....((hugs))

meatjeanne, it's time for you to take care of yourself. I feel like my aunt is going to be the death of me and it makes me mad, although I get over it and come to my senses. Please, join some fun groups and treat yourself to something special each day/week, no matter how small it is....you certainly deserve it and I know your husband would wish happiness upon you and not this sad state of affairs. Big, tight hug to you, lady!

Meatjeanne and mymares, feelings do not usually depend on logic, but please listen to your minds. You are NOT "betraying" anybody. The betrayal has already occurred and it was the malfunctioning is your husbands' brains that betrayed your husbands, and you too. You are as much victims as the poor guys are. Nobody asked for this. Everyone is handling it as well as possible.

This is a sad loss. Go ahead and mourn. Cry. Feel bad. But I hope you can overcome feeling guilty. None of this is your fault, any more than it is your spouses' faults.

Warm hugs to you. Both of you please keep posting. We want to hear how this is going for you. We care.

Meatjeannie, I am now in your same situation. I was due to pick my husband up from the VA respite tomorrow morning... They called me today and told me they felt that him coming home would not be the safest for me as they had seen a big change in his behavior this 2 week respite, and all there are familiar with him as he goes 2 times a year for respite..
I knew this was coming, but I was in total shock.. they already did all consultations and all agreed that he needed placement, it was my decision wether he stays (the locked dementia unit of the CLC has an empty bed) or come home and when the next bed came available he could come back.. It took me quite sometime to absorb this since I was not expecting it all today.. In the end I decided this is the best and most likely easiest adjustment for him (I am still crying and in shock),as he has been there 2 weeks now.. But I have been getting reports all week about him getting more agitated and wandering and just standing over other patients and staring down at them while sleeping, which is what he has been doing at home for a few months.. He was checked before and again for an UTI and none..
I too feel like I have betrayed him, as the last time I spoke to him last week I told him I would be coming Thursday (tho he doesn't know what day of the week it is) to pick him up.. BUT~ I also was nervous about "who" was going to be coming home with me...

I need to tell our children, one is 3 hours time difference and the other in Afghanistan and I usually Skype with him at night... They knew it was coming, but its still going to be hard calls to make..

We need to keep ourselves together for our spouses (I keep telling myself this) They dont want me to come for a couple weeks until they feel he has adjusted to staying.. that is going to be hard for me, but most likely better as if I went in the next few days I would break down and cry as I have been doing all afternoon.. In the end, my tells me its the right thing, my heart tells me I betrayed him..

Meatjeannie I don't have anything to add to the advice you have already recieved. It is very hard for you to deal with this sudden change in your life and give up your husbands care to others. of course you are crying it is the right thing to do, there is so much pain that needs to be washed away.
I did not understand the Capt's comments today but when you have been here a while you will get to know him and understand what a kind caring and intellegent human being he is. He cared for his mother single handed for many years with dementia till she died. and it was not an easy task. now he is giving care to his aunt her sister whis is just as demented as his mother. Not too many men take on this task so we all love and admire him. please don't judge this particular book by it's cover which is very well worn but enjoy the warmth and humor inside

They are not your friends. Friends don't do that. Find new friends who also have gone through what you have.

Get yourself into a support group where you see other people that deal with the same issue.
My husband is 64. I am 68 & a trained professional in the field. My life goes on.
So his does too....He is still at home as long as I can do this. When my daughter's died, he was the one who handled most of everything. I was out to lunch to put it mildly.
I can tell you that the depression will lift. It always does unless there is an underlying cause.
I am an R.N. & refused to take any meds myself. Still am not on any. Not into medications for myself. This is just my choice. I do have a support system, here on line. It would be great if you can get out to a support group.

Tell those friends to "go visit him. Please, sit there all day." It is awful that they would say anything except "I understand."

I am 60 and my mother in law and Mother are in their 90s. What I wish that they had done was "throw stuff out!" Who is supposed to go through all of your clothes and books and just stuff in general? So, you are going to be surprised when I say 'Have a tag sale, rummage sale, or give stuff away." You did the best that you could for him. Bless you.

Well said, CM. My mom had this situation when she and Dad were in their mid 70's. Mom's health was being affected and Dad needed 24/7 care. So she opted for NH for Dad (there were no memory care facilities or AL back then). It was really hard emotionally for both, but it was the best decision for both. We had an aunt with Alz whose sister cared for her at home - the two sisters passed within 6 months of each other because of the toll it took on the caregiver's health. We didn't want that to happen to Mom. What you do is be kind to yourself. You are doing what's best for you both - DH would not want you to get sick. As for the "friends", I say blast them the next time they have the audacity to be sarcastic. They are not in your shoes, their opinion is of no importance to you. Reduce contact with toxic people. Hugs.

Step 1 - get better friends! People who pick this time to criticise you are heartless, ignorant bastards and you want nothing to do with them.

Step 2 - give yourself time to adjust before you make any major decisions. But yes, do talk to any organisations that seem relevant and take careful notes of their advice.

Step 3 - big hug. You have been both practical and courageous. I really hope things begin to work well for both you and your husband from here.

Bonnie - perhaps your post is all well intentioned but it appears by your post you are looking for clients to hire you as a "Certified Medicaid Planner". If that is the case, then you should pay for ad space on this forum as many, many other businesses do.

As a Medicaid Planner, I often see people in your situation who are spending their life's savings paying for a nursing home and do so until they're completely broke. But it doesn't have to be that way. With a solid Medicaid Protection Plan there are legal ways to lower your long-term care costs and keep more of your assets. There's also a little known benefit called the VA Aid & Attendance Benefit that I help my clients qualify for. For 2014, the maximum benefit a recipient would receive is $2,085 per month ... and that's in addition to a military pension and social security. Your husband might very well be able to qualify for that. In addition, you also might be able to qualify for Medicaid funding. In a crisis situation such as yours we are typically able to save our clients up to 50% of their long-term care costs, but because your husband is a Veteran and might also qualify for the Aid & Attendance Benefits, it's quite possible for those savings to be much higher. My best advice is to seek out a Certified Medicaid Planner who can help you qualify for these benefits. Get help right away. It usually takes several months for everything to get approved. And while the VA is great for giving advice and getting you the proper forms, they may not be able to provide you with the hands-on assistance you need in order to do what needs to be done for you to meet the qualification criteria. Medicaid is a difficult system to understand and most people like you have to figure it out during a crisis situation when they've placed their loved one in a nursing home. But you don't have to do this alone. There is help and hiring a Certified Medicaid Planner or Elder Law Attorney will pay for itself many times over in the savings that you will receive. I'm sure that this is an incredibly challenging time for you and with the right help and support, you'll be able to secure your finances and focus on putting more balance and harmony back in your life. I wish you well. Hang in there!

As a Medicaid Planner, I often see people in your situation who are spending their life's savings paying for a nursing home and do so until they're completely broke. But it doesn't have to be that way. With a solid Medicaid Protection Plan there are legal ways to lower your long-term care costs and keep more of your assets. There's also a little known benefit called the VA Aid & Attendance Benefit that I help my clients qualify for. For 2014, the maximum benefit a recipient would receive is $2,085 per month ... and that's in addition to a military pension and social security. Your husband might very well be able to qualify for that. In addition, you also might be able to qualify for Medicaid funding. In a crisis situation such as yours we are typically able to save our clients up to 50% of their long-term care costs, but because your husband is a Veteran and might also qualify for the Aid & Attendance Benefits, it's quite possible for those savings to be much higher. My best advice is to seek out a Certified Medicaid Planner who can help you qualify for these benefits. Get help right away. It usually takes several months for everything to get approved. And while the VA is great for giving advice and getting you the proper forms, they may not be able to provide you with the hands-on assistance you need in order to do what needs to be done for you to meet the qualification criteria. Medicaid is a difficult system to understand and most people like you have to figure it out during a crisis situation when they've placed their loved one in a nursing home. But you don't have to do this alone. There is help and hiring a Certified Medicaid Planner or Elder Law Attorney will pay for itself many times over in the savings that you will receive. I'm sure that this is an incredibly challenging time for you and with the right help and support, you'll be able to secure your finances and focus on putting more balance and harmony back in your life. I wish you well. Hang in there!

You did the right thing, my father took care of my mother with multiple sclerosis for all of his 8 years of retirment. She can not move from the waist down and can no longer feed herself. And has to be moved very often. An aid would come all day from 8 to 6 and take care of her breakfast lunch dinner and changing her.. All night my 73 yr old dad would be up with her. He was the well one and he passed away suddenly on this past Mother's Day , had a heart attack. So sad , miss my dad and his grandsons and my husband miss him. We did put my mom in a nursing home and she gets 24 hr care. From a very heartbroken daughter just know you did the right thing it is very hard , doesn't mean you don't love them , it means you have done everything you could and now they need more care than one person can give. For your friends, people always having something to say , but they haven't walked in your shoes through your life. I feel sometimes people do not know what to say so they just start talking. Without thinking not realizing they may be hurtful. Surround yourself with positive people they are there and through this journey. You will meet amazing people like we have I just wish I would have met them earlier. You did the right thing , I can only wish things were different for our families.

Definitely call the VA. It is so much cheaper. They take his Social Security, not yours! I am in the same situation. Only I am late 60's and he late 70's/ I have been caring for him for 9 years now and it is just getting really bad now. I am doing everything with him or for him. Everything, and you know how that can be. I had to put my husband in a home for a few weeks as he recovered from a fall and a blow to the head. He was hallucinating and did not know me.. He couldn't walk. But after 3 weeks most everything came back! So I wanted to and did bring him home. He talks very little, but after three weeks in a lock down facility he did talk. He made me realize that he is still in there and that he still loves me. He even told me that after not having said it for two years. He was very happy to be home. I feel he will be going back within a year, but for now he is OK and I am handling everything ok. It is difficult but my 22 year old granddaughter is here with me for the summer and she gives me a little free time. Like yesterday I went and had a pedicure. What a luxury! I also have dogs for company. Don't feel guilty. While he was in there I took a lot of flack from his granddaughter, who has never come to visit in the last 9 years. And his daughters have been very supportive, but they kept saying he shouldn't be in a nursing home. How do they know when they have not been here for the last ten years either. They are going to come and see him now. I doubt he even remembers them. I know he doesn't know their names. Don't feel guilty. But do call the VA. It is a lot of paperwork and you need his discharge papers from the service. It is called a DD214. If you don't have it, you can get one from contacting a Veterans Rights Specialist. Call the County govt. and they will help you get all the right contacts. Good luck. I did get all the paperwork together in one day! That was an enormous feat! You will need a copy machine (Staples) so you don't give away any originals. You need tax returns, bank accounts, insurance statements, etc. All the important stuff. Also POA papers. Good luck.

MJ - your are overwhelmed and rightly so. Try to step back and realize that it is a transition for both you & your hubby and you have to make time for yourself (which I bet you are not doing). Yes do reach out to the VA to see what he will qualify for and apply for all. They do pay retroactively to the date of application. It seems to be a lengthly process of months to get placement. The VA NH seem to be few & far between though but if there is one that could work for you get his name on the wait list the sooner the better. There also are other military oriented NH, like Air Force Villages which are in a couple of states.

Then take time for yourself. If you used to like to garden, then get out there and dig some dirt, whack some plants, get yourself some outdoor exercise so you can sleep better. Set up a little respite & reading zone out in the yard that is new for you to get a change in your visuals. If you don't have a yard, most cities have community garden programs - we have several in my city (New Orleans) and most who garden are in their 60's. In most places the library has become a great resource - far removed from what libraries were in our 1950's & 1960's childhood too - often they have lots of speakers & classes (yoga, cooking, horticulture, genealogy) that are free and maybe an hr or two - enough time to get out of the house and move your mind into thinking about something else and speaking with others on subjects totally unrelated to caregiving & who don't know your whole backstory.

About your "friends", well often a lot of the hurtful things people say is because of their own fear that it could be them. I'd bet that they are singles too that say the meanest things too.

If you can, every few days try to get together a ledger of your finances & all your legal paperwork. So that you have a pretty accurate look at what it costs to maintain your standard of living & where you stand for the future. What often happens is that the "community" spouse (- that would be you and it is community as in living-in-the-community rather than community-property) often starts to spend down their assets beyond what they need to in order for the in the NH spouse to qualify for Medicaid. You don't want to do that as you will need all the funds you can for the possible years & years on your own. By & large the community spouse can have about 113K in liquid assets in addition to the exempt assets of a home & a car & in some states SPIA's under Medicaid. Also as the community spouse you can file for MMNA - which is monthly maintenance needs allowance - to be diverted to you from your spouses co-pay of his monthly income. So that you get the MMNA rather than all of his income going to his co-pay (also called his SOC - share of cost in medicaid-speak) to the NH. Think of it as alimony for elder spouses. Most couple don't realize that the still @ home one can file for MMNA and it gets often overlooked. Medicaid for couples is a totally different qualification system than that of an individual applicant to Medicaid (which is usually 2K in income & 2K in assets), so don't let yourself get confused on all this. Most folks have the experience of dealing with Medicaid system for a parent who is a widow or widower and it is very very different approach for Medicaid which is not the same as for community-spouse Medicaid applicants.

Yes, go to the VA. They will assign you to a team that will oversee his healthcare and review his financial needs. If he is a Vietnam veteran, he needs to be placed on the Agent Orange Registry to see if he is eligible for compensation.
My husband is still at home with the aid he got from the VA. Even with that help, I still struggle with the idea of maybe it would be better to put him in a home. I promised myself I would do everything I could to keep him home and so far I'm doing it. My doctor is concerned that I am struggling with depression. I don't see it as that. I'm struggling with reality. I feel for you and pray for you. No one knows what this disease does to the caregiver until they live it. Get better friends next time.

Meatjeanne, I so understand what you are saying about feeling like a traitor.. My husband has PD and LBD, he is a Vietnam Vet and only 63. I am a few years younger.. Right now he is at at VA hospital for respite.. SO YES, please contact the VA, he should qualify for Aid and Attendance, and possibly other help.

I did manage to get out of the town the first few days to visit one son and the grandkids... I have had 3 phone calls since returning home as to how my husband is more confused, agitated, and roaming then he use to and would I talk to him to calm him down... Respite with the Va here is 2 week program, he thinks he has been there for months, and I reassure him I am picking him up this coming Thursday as scheduled... The head nurse and Dr both have called me to tell me its time for him to enter a nursing home, that is where is now in the VA hospital he is.. I had finally done the paperwork for the state Veterans Home, but sadly there is a 2-5 year wait. the nursing home at the VA he is at is a little over and hour away, but wait is only a few months.. I have spent most of "rest" time crying and feeling like I failed him and a failure.. His behavior reminds me of his PTSD he had when he returned from Vietnam and sadly I really dont won't to go thru that again, because now I can't get away for a while or have him get away till he chills out.. I can't leave him now.. My head tells me its the right thing, my heart feels like I have betrayed him.. we will be married for 41 years this fall..

Just to let you know you are not alone and in the end we are making the best decision for our husbands AND ourselves.. It has taken me a long time to admit I can't do this alone at home anymore even with day care a couple days a week..

We will still be taking care of them, just someone else doing all the heavy work.. I will still be his advocate and pia to nurses and dr.'s about meds etc.. I already do that! he has become very sensitive to meds because of his LBD.

I am so sorry that you are suffering from the decision that had to be made, meetjeanne. My 5'2", 110 lb. mother cared for my dad after his bout with lung cancer and further complications. He was a large and heavy guy, even after the chemo and radiation. My parents' pastor lived five minutes from them. He went to their aid countless times when my dad fell while trying to go to the bathroom and it was impossible for my mother to help him. The doctor arranged for home health care to bathe him and to check his vitals. I was working and married, but I cooked for them once a week and stayed with dad so that she could go to play Bingo. This continued for over six years. In spite of the help we all were trying to provide for her, my heart broke every time I looked at her. I am sure it broke my dad's heart, too, to know that this was how they were going to spend their last years together, my dad helpless and my mom looking worse than he did. She lost weight, which she couldn't afford, and she was exhausted all of the time. She had passed the point of being able to care for him. I feared that she would die before my dad would. She kept her promise to him and to herself concerning putting him in an appropriate facility, but she was very close to a mental and physical breakdown when he died. I wish she had made the decision you did. It would have been better for her to visit him after a good night's sleep and time to care for herself. So, please do not punish yourself for making an intelligent and rational decision. He is getting proper care, and I think he would want you to take care of yourself and see you take care of your own health. As some previous posts have advised, get some new friends! The sarcastic people are not truly your friends. I'll bet you meet some lovely people when you visit your husband, and they will understand you and encourage you. There is help for you concerning the financial questions you have. Reach out to them and take care of yourself. Visit your husband often just to be in his presence. It will make you feel close to him in spite of his condition. My heart and prayers are with you, as are those of many of the people here. When you need some encouragement or just responses, this is a good place to come!