"Can anyone tell me where my husband is? Surely, that gaunt man staring into space in that wheelchair is NOT My husband!! I just was on vacation last summer with MY HUSBAND! He walked, talked, smiled, enjoyed eating out and knew I was his wife! "
I just returned from visiting the man who is a stranger to me now . He resides in a AlzHeimer Unit in an ALF. I shed tears when I see him. Where did he go? It isn't fair! How can our lives together be over? I want a do over. Please return him to me if you see him.
So sorry, dear Lorrie. I can only tell you that we truly feel your pain, having endured it, too. Wish there were more words of comfort, only that you are not alone. Sending you cyber hugs and understanding. Betty
I wish we could bring him back for you and we understand just how you are feeling. It's so frustrating and so painful.
Mine is nice and pleasant one day and nasty the next. Which is better? Having then here one time and not here the next? I would like him here all the time.
Lorrie, as Betty said, we feel your pain...so sorry this is happening to you and your husband. Sorry for all of us who are enduring this disease, and who have endured it...it is truly awful! Take comfort in the love and understanding of all of us here.
Just returned from feeding DH dinner. He was so unresponsive to me. Before AD, He used to pretend to be asleep in bed and not respond to me. Then he would jump up and scare me and we both would laugh. Tonight, I wanted to shake him and then he would come to life and it would all be over. I could have my husband back again.
Looking straight into his face and seeing blank eyes is devastating.
I can remember just sitting and staring into my husband's eyes and wondering what he was thinking. Even though most times they looked totally vacant, every so often I would see a small glimmer there. I always believed that his old self was still buried inside somewhere. While we can't get our husband's back, we can hold on to those special memories like the really funny one you described above. Try thinking about those happy times and smile, maybe it will help to get you through the really sad ones.
The sparkle, love and intelligence left my husband's eyes and was replaced by anger and a vacant stare. I felt a lot of fear, guilt and anger. When I could separate what was happening to me from what was happening to him I hoped and prayed that behind the blankness something was going on in his mind that was comforting to him.
I'm sorry. It's like we lose parts of them over and over again.
When I started this website in 2007, my very first blog addressed your question. (http://www.thealzheimerspouse.com/welcome.htm) Where was my husband? It was that question that NO Alzheimer Spouse had dared asked before, that catapulted this website. My inbox was flooded with messages from Alzheimer Spouses from coast to coast and even other countries, thanking me for exposing the truth about Alzheimer Disease and marriage. So it may be little help to you now, but at least you know that your anguish is shared by every Alzheimer Spouse. Although we can do nothing about it, we are here to understand and support one another.
This is just so damn sad. And I really relate to you talking about your vacation last summer. I ask myself this all the time - how did he go away so quickly? We were just painting patio furniture together, doing projects around the house, taking spur-of-the-moment trips out of town! How is he now so totally gone from me?
I am haunted by that look in his eyes day and night.
I am experiencing the same thing with my husband. I keep thinking that somewhere deep in his mind he still is the man that I have loved for the last 36 years. Our anniversary was the 9th of Feb. and I went to see him. He looked at me for just a moment and I thought I saw him in there, but then he was gone again. It is the most painful experience in the world. I ask the same question that you do...where did he go? We have both been robbed. This disease is mean and unfair. My kids tell me that they don't want to lose both parents to this disease, but I am not sure how to carry on alone.
dellmc53 Glad you found this site. Sorry you are going through this heartbreak too.
I am also not sure how to carry on alone. I don't like being alone. At night , when it's quiet I find my thoughts wander to the future. Then I think, this is not the way I want to spend the rest of my life. The only way to get through this is one day at a time. The feelings are too painful.
I still want my husband back. When I awake each morning, I reach for him. But, he is not there.
From reading the comments on this site for about ten months, it looks to me that most people reach a point where they wish their spouses would die. This point usually comes when the people with dementia are suffering or unmanageable most of the time, or when they have lost all enjoyment of life or understanding of their identity. Or sometimes it comes at a point when the so-called "well spouse" is completely exhausted and strung out. However, short of murder, which none of us (including myself) is prepared to commit, there is nothing we can do to make this wish a reality.
At the same time we are wishing for death, we are pouring almost all our resources (physical, emotional, financial, whatever) into our spouses' continued survival. And often this goes on for years. I view the fact that spouses must live with wishes and behaviors that contradict each other as one reason that dementia is so bizarre, nightmarish, and horrific.
I don't wish my spouse would die. Not yet. I still get some pleasure from seeing him. He still knows me, but he doesn't "remember" me. He has lived in the dementia unit of a nursing home for almost five months now. There have been good days for him and days when he is screaming my name. For the first time they had to give him some Ativan to calm him down because he kept screaming for me.
What I want so desperately for him is a peaceful death. I see some of those poor people all crumpled up in a fetal position living in a world unknown to us and I pray he dies before he becomes that way.
Even though I'm not a widow yet I feel like one. I live in our home by myself and it just doesn't seem right somehow. I'm married and yet I don't feel married. I feel like I'm living in a kind of limbo. I am getting used to it a little bit at a time but I don't really feel a part of the real world. Of course, this horrible weather doesn't help. Perhaps when the warmer weather comes and I can go outside with him, taking him into the garden, and even doing more of what I've always said I would do when I have more time to myself, I will feel better. I feel sad for him. I hate that he has to live apart from me but there isn't anything I can do about it. It's our reality now. I just have to live with it, and so does he.
Bev, I don't wish my husband would die, either, and for much the same reason as you - I still get some pleasure from seeing him. But I know there will come a time when I won't have any pleasure - maybe I'll even have excruciating pain. Even then, I'm guessing I won't be spending much energy wishing my husband will die. I'm a very practical person and have never understood wishing for things I have no control (like hoping I'll win the lottery when I never bought a ticket). At the same time, I'm very sensitive (probably over-sensitive), and I know that spending time thinking about death, especially the death of the person who is most beloved to me, is likely to drag me into a very, very dark place.
So like you, I feel sad for my husband but recognize that there isn't anything I can do about it. It's just our reality and we have to live with it. I have no control over life and death.
I'm also looking forward to warmer weather, so I can take him for rides on country roads and walks on the grounds. In fact, as soon as the roads are safe -- July, maybe? -- I'm going to load him into the car, turn on the radio, and just drive.
Oh Lorrie, like everyone here, I completely understand what you are saying. For those of us whose spouses have declined so quickly, it is impossible some days to comprehend where they have gone. My DH has been in care for one year now, he is still mobile with a hand to hold, but completely vacant. He doesn't know any of us and has so much trouble even focusing on a face or voice when we are trying to speak to him. He has only been diagnosed for two and one-half years! I simply can't wrap my head around the fact that he is so cognitively shot but can walk around and even toss a ball back and forth some days. No one in the medical profession has any answers and it is so darn frustrating. Some mornings in the empty bed I fantasize that I will wake from this nightmare and he will be whole but, of course, we know this is impossible. If you ever find that 'do over' magic wand, let me know. I wish you the best.
Even though I knew it was likely best for HIM to leave this earth, just a shell of a person....I wish he was STILL ALIVE I MISS HIM SO MUCH!! I was angry , at the beginning, for him to get sick and leave me behind. sad today,,I mostly do good, but as the 23rd of each month approaches, it comes back.
I am sad too for you Lorrie, and all of you here just missing your mates.
lorrie, nbgirl and myrtle, and Bev. I have felt a lot of guilt at times because I wish he would die. I now just,pray that he will go sooner rather than later. I just moved him to a long term care from the assisted living. It really is better because I can see he is getting more one on one attention. The hospice nurse told me she cannot understand how he could lose so much executive function and still be walking and eating. They have changed rooms 3 times because he peed all over his roommates bed. They called today and said they will put him on a 2 hour schedule. Bev like you I am some kind of limbo feeling like a widow but not. Frankly sometimes I do not even know who I am. I have gotten used to the quiet house. Tonight the temp is supposed to hit 20 below. I am sure when spring comes it will be better.
I didn't go to see him today but I will tomorrow. I was lying down a little while ago and when I heard a car door slam I thought to myself, "he's home." For some reason I really could picture him pulling into the driveway and coming home for dinner. It was so strange. He's been retired for 10 years! I know now it was my neighbor's car of course but it was the strangest feeling.
I've limited my visits to every other day now but on the days I don't go I feel bad, not really guilty anymore because I know he's being well taken care of, but it makes ME feel better when I come home now from visits because I see that he is ok - if that makes any sense. But, I need the other days to myself. I think what I said sounds kind of mixed-up, doesn't it?
There is so much to worry about. Now to have the added worry of the expense of the nursing home, wondering how he would feel if he knew what the money we saved is going for. I know he would be really, really upset. As a matter of fact, he asks me sometimes, " What does this place cost?" Never, in my wildest dreams, did I think this would happen to him, and to me.
And Coco, I feel for you. It hasn't been very long since your Dado died. Give yourself time. It's only been five months since mine went away and I miss him terribly, even though he is still here in body. What will I feel when he is gone? Relief? Yes. Grief? Yes. Sadness. Yes. All those things. You have to feel all those things before you can heal.
We once talked about our sisters. You had lost yours about a year or so before I lost mine. I still have not gotten over it and it's been two years. I can't even go to visit her grave. I appreciated so much your words Of wisdom then. You will come to terms with Dado's passing someday but, let's face it, the hurt will never fully go away when you lose someone you love.
Bev, you are certainly not alone in your financial worries. My husband is still home but has a live-in aide which costs a pretty penny, but thankfully he has some LTC insurance which helps to offset the cost. That however will run out at some point. I am thankful that we were able to save to live what we thought would be a comfortable retirement (before early onset FTD) but had no idea that all that we saved will be spent on HIS care. I am resigned to the fact that I will most likely be on Medicaid and possibly other assistance when the money runs out. Like you, never in my wildest dreams did I think this would happen to us.
LFL, you should talk to an elder are attorney about when to apply for Medicaid. My impression is to not wait until the money runs out. If you apply earlier then you should be able to keep more money.
Yes, talk to an attorney and plan in advance for how you are going to finance the Alzheimers money pit. I know I've said it a time or two (or three), but the idea is to get the Alzheimers patient cared for without impoverishing the well spouse.
I have spoken with 3 elder law attorneys and they have all outlined the same options none of which works for me. I have my own debilitating illness and need access to money as things happen to my health. Also my understanding is that we would have to "spend down" in order to qualify for Medicaid and at this point that would be more than I want to or need to spend. I can use that for his care. No one has given me a way to protect the money, have access to what money I will need for me (without caps) when/if he's on Medicaid. One attorney said "The good news is you'll be able to keep the house and around $100k, the bad news is you won't be able to afford to keep the house."
LFL, that's exactly what I've been told. I went to an elder care attorney 3-1/2 years ago. It didn't do me much good as far as nursing homes and Medicaid go. It turns out that with new rules I needed to get things taken care of five years ago. So, in our state I have to spend for his care to a certain point and can only keep,a certain amount for myself. I would have been better off not saving the money.
LFL, it is a complex situation. You will need to plan carefully to formulate an individual strategy that will work for you in this unique situation. It looks like you need to use the LTC insurance for as long as you can, and then start private-paying for his care at home, being as frugal as possible while still meeting his health and safety needs, of course. I am wondering if you can avoid Medicaid altogether by getting Hospice in for him at home…which would bill Medicare 100%. As they would probably not give you the aide hours you would need, you could continue paying for private aides coming in to augment Hospice services. If he gets to the point where he requires two people to transfer him, (if you are not physically able to help the aide), you could have your private aide overlap with the Hospice aide so there are two aides there to at least get him up, do a shower…whatever. Then he could be left in bed for your private aide to do incontinent care, turn and position, etc. Or perhaps the aides could use a hydraulic (i.e. "Hoyer") lift.
I was desperately trying to avoid Medicaid and nursing home placement for Larry, as I am 25 years younger than he was, and just did not want to spend the next 20 or 30 years of my life with no money. I don't need much, and live a fairly minimalist life by choice (seems like the older I get, the less I want)…but still.
Keep us updated. I know that others on this forum have been through similar situations and probably have some good ideas.
LFL, Well, let me be the first to give you a way to protect the money and at the same time have access to it - hide it under the mattress. Yes, I am kidding but only half-way. Several friends had told me about finding out that their mothers had stashed large amounts of cash in oddball places. Then, 15 years ago, my sister found $35,000 in cash in an old ski boot in my mother's basement while she was helping my mother clean out her house prior to moving. My mother had put it there when my father's AD progressed. (At that time the Medicaid rules only had a look-back period of 3 years). By the time my sister found the money, my father had been dead for 10 years. Of course, hiding large amounts of cash from the government is fraught with legal issues (Medicaid fraud and so on) and risky since it can be destroyed or forgotten. But there is also some sense to it and that fact that people do it shows how desperate they are.
elizabeth, I can understand your concern about spending the next 20 or 30 years of your life with no money, even if you prefer a fairly minimalist life and don't need much money. (I had the same concern, since my husband is 19 years older than I am.) Money does not only pay for a style of life; it pays for independence. When people do not have money, they are often forced to live where they don't want to, such as near or with relatives, rather than in a location and in a manner of their own choice. That's what I was worried about, but since my husband was eligible for a facility which I can afford based on my current earnings, I think I will not be broke after he dies and so may still have some independence.
In Jail, that sounds neat! One of our members, Bettyhere*, has a grandson who, with his girlfriend, are on a tour of North America in their tiny house. I think they are in Louisiana now. Their website incudes tips on design, including which things they would have designed differently. The link is http://tinyhousegiantjourney.com/.
The only tip I remember is that if they had it to do over, they would put the little entry porch on the curb side of the house, so if they were parked on the side of a street, they would not have to step out into the road.
I too am trying to avoid Medicaid for many reasons. As I've said in previous posts, my husband and I were diligent savers for our retirement so we would have a comfortable life, travel where/when we wanted and have enough money to pay for a home aide to help care for me when I no longer could manage with just my husband (I have severe RA for 40 years). Our plans also included working into our early to mid 60's. Unfortunately his employment was spotty in his early-mid 50's (looking back now, early stages of FTD) and he was finally dx'd with FTD at 58 (I was 57). I had to quit work to help care for him before we got a home health aide. So now I am using the money we saved at least 5 years sooner than planned, with no opportunity to "replace" what we're spending by working and spending incredible amounts on his care (whether it be at home or in a facility-we don't qualify for any assistance because our assets are too great).
Elizabeth* we live frugally too...there's nothing much I need anymore, in fact I want to get rid of a lot of "stuff", but the cost of care and the house + taxes is expensive. Like you, at 63 I'm not anxious to live the next 20 years without any money if I can help it.
myrtle, you're right....under the mattress is an option, but can get tricky as you say. But hey, with interest rates the way they are (almost 0 anyway) it's a tempting option. I know my DH has squirreled some money away in the house but have no idea where it is and I'm sure it isn't even $1,000.
Not complaining really, just frustrated by the enormous costs and the uncertainty of how long this will go on.
After my MIL died (she was caregiver to FIL and died 9 years before him) we found over $100,000 she had stashed around the house. She never asked for help but after finding all that we were angry because she could afford it. On a funny note, under the head of my FIL's bed we found a big pile of pennies!
It's true that people hide cash in their homes, but you need to be very, very careful about that. One of the clients in our home care agency had stashed $25,000 (we were told later), trying to keep it from being lost to the Medicaid spend down. Apparently a trusted neighbor knew about it…and stole it. Since the client would have gotten in trouble for Medicaid fraud if he had revealed the situation, he kept quiet about the theft, and really lost out big.
Having said that (and as far as I know, it's a true story), I used to consider getting some kind of fireproof box or actually having some kind of hidden safe installed in our house, to stash a large sum of money that I would gradually save up. I chickened out…was just afraid to have huge sums of money in the house.What if the safe installer came back a year later to try to rob us? What if I were killed in a car crash and no one would know there was money there or where it was? I don't know…pros and cons. But I didn't do it.
As I am reading these posts I can identify with so many of you. I just had to put my husband in a nursing home a month ago. I was astonished at the prices of the facilties that I looked at. My husband would be so upset if he knew that I am having to spend all of his retirement annuities on his care. I just retired a couple of years ago to take care of him. I am also having to cash out my retirement to get enough money together to pay our mortgage and my living expenses. I am also caring for my mother who lives with me. She is 91. I guess the hardest part of this for me and I guess everyone is the uncertainty and the fear that he will outlive our money. We had such great plans and this disease stole our lives from us. I wish I could get some pleasure from seeing him but all I feel is pain. He still knows who I am but he can no longer walk, is incontinent and cannot feed himself. It shatters me into a million pieces but yet our hearts are tied together. Is it wrong to wish that it would end?
No, delimc53, it is not wrong to wish it would end. We have all done that very thing, I'm sure. Keep holding onto the knots in the rope we have thrown out on this site for many years! Lots of knots, lots of holding on.
Now that my husband can no longer walk, talk, feed himself, is incontinent and unresponsive my feelings are changing. I also wish peace for him and all our family. The husband I knew and loved is lost forever. I can't imagine how I will get through it but I want it to end too. Both my therapist and hospice visiting nurse Have reassured me that this feeling is normal.
I agree with Vickie and Lorrie. It's not wrong to wish that your husband will die. A lot of care giver spouses wish for this, sometimes for their spouses' sakes and sometimes for their own sakes. The problem, though, is that wishing our spouses will die really goes against the grain, especially since we have spent so much time and energy helping them to live. So maybe it would be better not to dwell on it. After all, your wishes are not going to have any effect on your husband's longevity, so why go down that road at all?
I don't see as much as "wanting them to die" as I do just wanting so desperately for the bondage that holds them imprisoned and helpless to be broken. My husband did not want that for himself and was absolutely miserable in that state. I wanted it to be over for him as it was heart wrenching to see him so aware of his limitations.