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My husband is 68 years, 13 years older than me. He is going blind, has confusion and some memory problems, we were told it is not dementia or Alzheimer's, heart problems and some minor problems with depression.

I have severe depression, fibromyalgia, migraine headaches and vertigo. I am also his primary caregiver. Because he doesn't sleep well I am unable to take my medication because I can't risk him getting into something that might hurt him. He also has issues with falling and if he falls I can't get him up by myself.

Not only am I putting him into a nursing home, but we are moving from Alabama, where we have lived our entire married life, to Ohio where all of my family lives. However, we will be leaving our 4 sons down here. Problem is they are no help in taking care of their dad. (They don't want me to put him in a home either.)

The home we are in is a double wide trailer and falling apart. Our one son builds houses for a living, but still does not help fix up our home so we can stay and still I am the bad guy.

I have also thought about moving into the home with him, but after visiting a couple of different places I can't do it. I have agoraphobia also. The thought of living in a place where you have little to no privacy nearly drove me to suicide. Two of my loving sons told me that I could not leave their dad in a place like that by himself so I would "just have to get over it." I hope that once we are up there and I can get back on my feet that I might be able to find a place for both of us where we can have live in help.

I confess that I can no longer make sure we both eat, get medication, have clean clothes and dishes, keep house or anything else a normal person should be able to do. There is no way I should be a caregiver who not only needs to do these things, but also help him dress, shower get from place to place (except at home) and occasionally feed him and help him in the bathroom. And as I mentioned before if he falls and no one is here or he can't crawl to something to help me help him up, I have to call 911 to get him off the floor.

Please, if this makes any sense give me some ideas. My husband cries at times thinking that I am going to take, dump and forget him even though I promise to visit daily or have family visit if I can't.

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In assisted living, while your husband may expect you to do everything for him - there would be others that could do a lot instead. Have you discussed this choice with him - living with you accepting help from others or living without you and having no choice but to accept the help. Doesn't make sense - either way someone else would be doing the work, the difference being your going through this together or him being alone.
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Ch3er1es5Gr8ce, thanks for the update on your husband's health. I understand the complexity of macular degeneration as my Mom had that in both eyes, and my Dad has it in one eye and there isn't anything the eye doctors can do for it. My Dad was always falling, a mix of age decline and forgetting he can't do everything he once did when he was younger. A rolling walker was a great help for him.
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He might qualify for some VA services (other than housing, as you said). Consider calling or making an appointment with a social worker at your local VA facility (either the larger VA hospital center or the smaller, possibly more local satellite clinic called a CBOC = Community-Based Outpatient Clinic) to get a better idea of what services he might qualify for. Sounds like he may have served during the Vietnam era; have his 'DD-214' paper available if there are any questions they have. Otherwise, consider contacting your soon-to-be-Area on Aging office (should be in the county government section of the phone book) and speak with a social worker to discover what is available in the Ohio area. Social workers are the best and are so knowledgeable! From what you have said, it is clearly very understandably overwhelming for you. Maybe break what needs to be learned / questions that you have into 'steps' by writing in a notebook - might help 'organize' this difficult time for you (plus, you'll have a record and not have to remember it all).
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I forgot to address the issues of what the doctors say about his confusion. They say it could be plaque from his heart, he had a triple bypass last March. As for his sight he has macular degeneration in his right eye that that was treated with shots to the eye, but he also has glaucoma and cataracts in both eyes. The eye specialist he goes to said that surgery for his right eye would not do any good. He did have surgery on left eye. The doctor told him that it would not improve his sight very much, but that it should help him keep the vision he has for a longer period of time. The pressure in his eye has come down, but the medication that he is using after the surgery can cause an increase in the eye pressure. They removed the cataract and vented his eye to release much of the pressure that was in it. (It went from 19 to 9 with the procedure.) The plaque from his heart could possibly be causing some of the sight problems also although the specialist never mentioned it. And his vision problems along with the heart problems can cause the trouble with falling.
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Ch3er1es5Gr8ce, one thing to make note, Assisted Living facilities will want to do an assessment on your husband prior to him wanting to move in. If they find he needs a higher level of care, they won't let him rent there, and will recommend a nursing home.
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My husband and I will be moving in with my mom when we first get up to Ohio. She is in her 80's and still works outside her home and takes care of everything in her home. She and my sister in-law have been looking at some places that my husband can go into. The places are assisted living and that is what we looked at together, I miss spoke when I said nursing home. My husband is a veteran and the places that have separate buildings for couples don't usually take VA benefits for them.

I know that there would be a lot of benefits to both of us living in assisted living, but then my husband would still expect me to do everything for him and as I said I need a break. Also, the agoraphobia (an abnormal fear of being in crowds, public places, or open areas, sometimes accompanied by anxiety attacks.) nearly kills me. Would he be better off in a place like that (hopefully only for a time) by himself with me and family visiting him or with me dead and only having my memories and the thought that pushing me to move into one of those places caused my death? People that don't understand mental illness may not be able to understand how frightening it is to feel cornered in a fight or flight situation where you are not willing to fight. I can fight for those I love, but not for myself.

As for why I can't take care of anything. I think it is because I am so burnt out and haven't been able to take care of myself properly. Also because two of our grown sons live with us. I have also told them what I do and what they could do to help with their dad. They make promises to do things, but never come through. I even explained that they really left me no choice, but still think that they could do a better job. We can't even live in our home because of the condition that it is in. I have even said about putting all the boys out and off the property, but my husband doesn't want to do that. I HATE confrontation, but I hate what they are doing to their dad even more. Depression runs in families and the two youngest boys are ours and both suffer some depression, the youngest has it worse. Depression is a very serious problem. (NOTE: This is a big problem in our country.)
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It sounds like your husband might have bouts of 'delirium' (a.k.a. 'confusion') which is tied to many medical conditions (i.e., urinary tract infections, pneumonia, heart conditions, medications, blood-chemistry imbalances, etc. and it's not always reversible despite what is reported), as well as compounded by depressed mood, by your reports. When you move north, first get him enrolled with a ** 'geriatrician' ** (a provider who specializes in elder care or gerontology and who understands well the aging body / related physiological changes). A full / new medical examination from 'fresh eyes' and thorough review of **all** (including herbals & over-the-counter) medications would be very important. You could consider looking at facility placement as a 'trial' / perhaps 'temporary' ideally - if he improves / stabilizes, there is no reason why you can't take him home (with lots of supportive services hopefully to remove some of the caregiving burden). Also, get copies of his medical records to take with you - that will expedite care. If he doesn't, staying in a 24-hour care-facility will allow you to bring your new-found energy in to visit / support him as a 'wife' (not exhausted 24-hour caregiver). As a gero-NP, I have witnessed people in similar situations like yours' actually bloom & flourish after placement into a good facility (both the 'patient' and the 'family'). Do what you need to do; you know what is best (and there is NO 'wrong' decision). Best wishes.
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Need to read your post again. Will answer later.
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Ch3er1es5Gr8ce, I have some questions regarding your husband's health. You mentioned he has confusion/memory issues yet his doctor says no to Alzheimer's/Dementia. What is the medical reason for the confusion? Your hubby is quite young at 68 for this to be the norm. What does the doctor say?

Also regarding the falling. What is the medical reason that he keeps falling? Again, he's too young for that to be the norm. Also, what is causing your hubby's blindness? Eye issues is a norm for one in their 60's and 70's. Depending on the issue, some can be corrected.

What other medical issues are there? From what you described none of those would warrant a nursing home.

I am confused when you wrote "I confess that I can no longer make sure we both eat, get medication, have clean clothes and dishes, keep house or anything else a normal person should be able to do." Could you explain more. You are only 55... my Mom did all those things in her 90's and she was legally blind and almost deaf and had mobility issues, and she helped my Dad who also had general age decline. I realize every case is different.

There has to be more to this story.
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I'll address another aspect - the allegedly well meaning but not helpful grown sons.

I'm a bit more aggressive and would be so with the sons. You could tell them gently that you share their concern about finding a place for your husband, but you can no longer handle his care and are so relieved that they share their concern. Add that you open their physical help with your open arms!

Then present them with an exhaustive list of tasks that you do, ask them to review it and indicate which they will volunteer to take over, ASAP. You can explain that your goal is to bring all the adult children into the picture so they can assist because your health is declining and you can no longer handle full time caregiving.

Give them a time frame to decide how they'll participate. When they find excuses, make it clear that you can't handle the situation yourself, they've not stepped up to their responsibilities, and as his wife you have to make choices that are best for both of you.

If you don't challenge them and allow them to reveal their unwillingness to help, they'll continue to find fault with your plans.

I think you're totally burned out now and need some respite, ASAP.

But I would consider IL; some places aren't as open as you might think. Certainly there are common areas, but you do have closed apartments, and in fact might have less involvement with neighbors than you might in a double wide, where many people can see what others families are doing the moment you step outside.

I would share a concern as well about hoping that you can get back on you feet after moving closer to your family. This is most definitely not a criticism, just an observation from reading your post. I think it's natural for a lot of people, including me, to think that a situation can be changed by making some surface changes, such as location, living arrangements, etc.

But the underlying issues remain. Be fair to yourself - how would moving to Ohio and being closer to your family SPECIFICALLY help? Is your family on board with the move? Will they provide respite care as the 4 sons don't? Will the nieces, nephews, and other relatives visit?

Do you have a place to live in Ohio? Have you investigated places for your husband if he doesn't remain at home?

I would spend some time fleshing out the Ohio move plans to identify any potential pitfalls and address them now before you move and find that you could be in a worse situation.
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Before I even read Rainmom's comments I was thinking the same thing. Why not get into Assisted Living for the both of you? Not only would your husband benefit from the extra help that's around but you would as well and you might feel less stressed out knowing that help is right there on the premises.
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I feel so badly for your husband and you. The poor man must be terrified - losing his sight and now he feels he is losing you. There are in-between places like Independent Living or Assisted Living that are very much like apartments that you might consider for you both to live. I don't blame you for not wanting to live in a nursing home at your age but given your own set of health issues, IL or AL may help you as well - and you could still be together but with 24hr care at the touch of a button, help with meds, housekeeping, laundry, bathing etc. all the things you are struggling with now. Please consider it. When my parents moved to IL it was because my dad needed it, not my mom - but she wanted to be together so she went. My dad only lived another 18 months after the move but I know she has never regretted for a minute the choice she made.
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