I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. As usual, it came to me because of a couple of incidents with my AD husband. I may be way off base in my assumptions, but I would like to hear from you on the subject. Please post comments here.
Sadly there is no good way to go with this. DH has been mentally unable to do so many things for so long now. He depends on me for everything. Even though his body would be able to do it if his mind would work. And there are times when DH cries and tells me that he can do it. So some part of him knows that something is really wrong. But most days he seems blissfully unaware of who he is and where he is, or even who we are.......
I am sorry this has hurt you so much Joan, I wish there was a way to help.
Dear Joan, I know how painful this is for you particularly because Sid is so aware of his disease and decline. My hb is not aware and I will tell you it's not easier....it's different but not easier. There's nothing easy about Alzheimers or dementia. We are all experiencing our own personal pain and that of our spouse. EVERYTHING about this disease is challenging and heartbreaking, at every stage. My husband is fully functional physically but cannot do some things (toileting, for example). He has no idea that his brain isn't functioning normally (or at least he doesn't admit it). Although he goes out every day, walks, exercises, he feels and behaves like a caged animal and tries to escape at any opportunity. He is strong and physically fit and is VERY physically aggressive. I am grateful my spouse doesn't cry, but honestly I'd rather he cried than threaten me physically. There is no good scenario where dementia is involved and as I said it is ALL heartbreaking. I am truly sorry you are going through yet another horrible phase and I wish I could help you through this as well. Many (((HUGS))) and we will be here to help you through this.
Joan, I really feel for you. I remember going with my DW to the neurologists visits and being so afraid of telling the neurologist the truth when he would ask how she was doing. It was bad enough that she felt bad by failing his little tests he would give her at each visit. She was aware of her shortcomings and would apologize for not doing better. How could I tell him that I could notice he decline between each visit? It would devastate her. But at our last visit I absolutely had to tell him the truth. To my amazement, my DW sat there listening but did not get upset or protest. It felt like a huge weight had been lifted off. When I run to the barn to spend a few hours with my horse (My anchor), she gets angry at me for leaving her, but this passes and by the time I come home a few hours later, she has totally forgotten that she was angry with my leaving.
I think their struggles, and emotional pain over their deficiencies while real are in the moment and due to the short-term memory loss, pass within a few minutes or hours and they no longer realize that they were upset. However we remember and the pain stays with us for a long time. What I have learned to do is to keep my DW in the moment. To stay upbeat even though I am crying inside and divert her focus on something else that will keep her positive instead of feeling down. I do not know if it will work for your DH as my DW may be further along on her journey, but when she says she can't do something, I say that is ok, I don't expect you to be able to do that, but maybe you can give me a hand. It usually turns out that she is just there with me watching as I do it, but she feels like she has participated.
A really important topic for us right now. Ron has always said he wouldn't go to "one of those old people places". Today I finalized plans for a respite starting next Monday. He will be going to the Friends Home near us. I had said nothing to him about it until the head nurse in the Skilled Nursing unit came to our home today to assess him. Then I just introduced him to her and said where she was from. I was surprised he just went along with the program. She took his BP and asked a lot of questions, most of which he couldn't answer. We told him he would be going to visit them next week and it didn't upset him at all. Maybe he is at the stage when he is really unaware? When I take him there it might be a different reaction. I have been dreading this, but I really need to go to NH to see my brother who is very ill also.
Joan it is true in our case. As you know, Dado has had such a fast decline, and even when he went to his new home 4 months ago, he would make a fuss when I left and it was really difficult. Now, he just wants to sit in his chair, he loves his male caregiver and sometimes I think more than me. I really don't know if he is aware of not being in "his" home, though I give him updates all the time and tell him about the cats.
Yes, it is better for them, I believe, that they do not know. Oh poor dear Sid I sit here and cry for him and you. I am so sorry Joan.
Sometimes I get little niggling guilt that it has all happened so fast, from diagnosis two and a half years ago, from a still driving and working guy, to where he is now. I get the guilt, when I see that it makes my life "easier", while he has to suffer. And when I read what you are all going through year after year after year. I know I have done a great job in every way. Yet it feels strange to "go on with my life", it was just YESTERDAY we were laughing and cuddling and barbequing and having a beer. God I miss him.
Oh Joan, to be truthful I am THANKFUL for my DH's oblivion. Tom NEVER acknowledged that he had a problem & when I would talk about his “memory problem” (after his DX) he would say, “What memory problem, I don't have a memory problem.” Now I realize that it was almost a blessing that he never acknowledged it, because he never agonized over what he was losing. When I was forced to place him, because of his agitation & aggression I was worried that he would be upset & want to go home, but by that time he was so unaware of where “home” was that wherever he was became home. Joan, my heart breaks for you. Like LFL said, I also wish there was something that I could do to help you through this. Just know that we are all here for you. (((HUGS))).
How deeply heartbreaking to read.... I am so very sorry Joan.
As you know we are in late stage now. Lynn is trapped in his own little world. It is so tragically sad, heartbreaking. At first it is of course just gut-wrenching. Over time it became much easier for me to see and experience because his little world is a happy place. He is content and happy. Truly what more could I ask for? What peace and comfort that brings to my heart.
I would agree that late stage is harder on us than it is on them for this very reason. They are blissfully unaware, thank God!
But the mid stages, and even the later stages, when they are trying to cling so hard to who they were, when they do still know what is happening to them...... I honestly can't think of anything worse than knowing you are losing your mind! And knowing there wasn't one damn thing you could do about it.
Forever etched in my mind is the stark terror I saw reflected in Lynn's eyes when he knew what was happening to him. Forever I will remember his pleads to me to help him end his life. There is more, but I just can't let myself "go there"...
Beyond cruel!! No matter how much pain I have and continue to suffer... I believe they do suffer much worse. I just can't imagine that kind of torture. The hell they must go through when they are still aware, unimaginable. *tears*
I have said it before and I say it again, if there can be one blessing with this damn disease, it is that our loved ones eventually reach a place where they are no longer aware of what has and continues to happen to them.
I was told by my support group leader that my husband still has a tremendous amount of self awareness for as far along as he is in the disease. She said it is good and not so good. My husband is entering stage 6 but is fully aware of his decline. I have to stop taking him to the senior center because yesterday they called me and told me he walked into the ladies bathroom and did not know where he was. Funny thing last week I was wondering when they would call. I am still probably 3-6 months away from placement so it will be interesting how we both manage. He basically sleeps or watches tv. We are seeing the doctor tomorrow.
Thanks for the wonderful blog Joan. I am learning so much from all of you. MY DH truly believes that there is nothing wrong with him, that he is not failing but as all of you know we see it and I do believe as some of you are saying that may be harder on us as we do this walk with them and see our wonderful strong partners slowly disappear from what we have known them to be. DH is not as aggressive as he was, but can still get pretty nasty is he can't have his own way. He is still quite strong but tires fast and has no sense of danger and can't be left alone but if you meet him you would think I am nuts or blind, but the Dr.'s see the changes and so do his caregivers and is is heartbreaking. He gets so frustrated but never cries just get angry with himself or me. I also hope his sense of awareness goes before he gets totally disabled but I guess we just have to deal with how it plays out. We have no control on this terrible disease.
I am sorry that you and Sid are going though this. I believe that each dementia case is uniquely different...each dementia case is challenging and each one is filled with pain and suffering. Although each case is so different there is no easy way. We suffer...they suffer...but in different ways. Pain is pain. This is hell on earth. There is no escaping it until the end. I welcome the end for both of us.
I am so sorry for your heartbreak, it is so heartbreaking to watch our loved one decline and start to disappear. My Herbie doesn't seem to be aware of what is happening to him and for that I am grateful. His body is starting to decline now after 83 years of great health; his stm has been reduced to nano-seconds and he has forgotten many things about our home and is having difficulty with his words, as is Sid. It is truly heartbreaking.
I don't know for sure, but I suspect that being unaware is a true blessing. If he knew, he'd be like Sid, I am sure of it.
All we can do is endure. We get really good at it.
Joan, I am sorry that you are dealing with this. I am sorry that Sid is dealing with this. My DH and i are right where you are. Except He is physically strong. Slower in his gait and reactions, but still gets around. He is aware of his decline. He gets frustrated and angry. He tried to blow up floats for the pool with his air compressor and could not. At our daughters wedding for the first time he did not know who I was. Then the next day he did. He calls himself stupid all the time. Then other times he says nothing is wrong with him or he is better. We go to the doctor today, it will be a bad day. He always gets upset after a doctor visit. That is because he hears and understands what is happening to him. We have been dealing with this now for 9 years. He is in stage 6 in most things now. Everyone here is in my thoughts every day. I prefer the days where he does not realize how bad he is, like in a daze. We are dealing with poison oak again. He has it all over him. Went to urgent care and now dealing with one more medication. He keeps going out a d pulling weeds. Then asks me what the new medicine is for, while his eyes are swollen from the poison oak. Sorry rambling.
We are entering the placement stage here as well but due to his aggression. I talk to him openly about what is going on and why. He can't remember his rages. I asked him where he would like to go and told him about a couple of places I thought would be a good fit for him and why. He said he would like to go and see them and he would pick which place. He thinks he would want the veterans hospital even though it is far away but it's back where we used to like so have friends around that would come and visit him. Plus it is a really beautiful place with a mini mall in it...that is how it was discribed to me...with lots of outings and activities. I think it would be a really good fit for him. So as much as possible I am going to trying to make it a positive experience for both of us. Not sure how it will go but I'll try.
Joan, yet another punch to the gut, and another...as this horrible disease continues. It is such a tragedy to see your LO honestly realize their plight. It is a tender mercy that they soon can't comprehend it all, yet remember it again,.... but it's not dwelled upon like the caregiver must do, without choice. It's all just so very painful. Them being fearful of placement is also hard to watch and comfort. Even when forgotten, you can see their unsettled knowledge that something “wrong' is going to happen.
Everything is wrong with this horrible disease. We all need to remember that it's a road traveled by both of us. We both hit potholes and bumps, but we do it hand in hand, and yet both feeling alone. Even though it is painful for one, the other is having their own experiences to endure. As always through our lives shared, the strongest cares for the one in need, neither selecting their turn in this role. Placement is painful for both, but a remedy for future care for both. It is hopeful that compassion and Love will also again feel stronger. A roof can not break your bond. They know you are 'there' for them. I truly believe that. Hugs and strength to you, in my prayers!
Oh, how I wish DH was NOT aware of his condition. Although he doesn't mention ALZ anymore, he knows something is wrong with him and will sometimes ask me what is wrong. I usually just tell him it's his heart condition (just A-Fib). This is all so very sad. God bless us all.
I, too, wish my wife were not so aware. She will often start crying spontaneously and when I ask what's wrong she tells me that she can't stand what's happening to he ... she can't remember anything, can't do anything, etc. VERY hard to deal with, emotionally,for both of us. She is now on a waiting list for a bed in an Assisted Living residence. That day of placement will also be VERY difficult for her... and for me.
I too, sadly am starting to think about placement . I have harbored the hope that if and when it happened my dh would be so far gone he wouldn't know where he was or that I had done that. I have held onto this hope for the past 9 to 10 yrs. My dh is still physically strong, but I can see de,line in stamina. He is a stage 6 for the most part. He forgets some people's name. But never wavers on mine. I just pray I can hold out here at home until he reaches that stage of unawareness. If things get too bad, I'm not sure what ill do about placement. I know I could never talk to him about it. We don't discuss his Alzheimer's . That's the Wayne wants it.
When Don asked what was wrong with him, I just said "your memory is broken". He always accepted it. The worse part of his memory loss to me, was the day he asked me who HE was. He really didn't know and looked so panicked. He said he'd be okay as long as I knew him. Just heartbreaking. He didn't know who I was for years. He did know that I was someone that cared about him.
While my wife has some awareness of her symptoms, she does not recognize memory loss at all as an issue. Right now her memory loss is minor but she is showing increased problems with short term memory.
I agree with you Joan!!!!!!!!!!! My Paul is doing ok now-he is in good physical health and his memory is still pretty good .He can not dress himself correctly and will wear his shoes on the wrong feet .I do not know how one can remember everyone he ever worked with but can not put on a pair of pants and zip then and have no idea how a belt works. He knows they told him he has Alz. and he worries about it getting to the point where he will be separated from me. This disease has left me with half a husband-and half a child. I hope when the time comes that I have to place him that he is in HIS own little world so he will not know or understand what is happening!! I found him standing by the mailbox with tears in his eyes and I asked what was wrong and he replied-I don't know if I just put the mail in the box or if I need to take it out!!!Must be HELL living in their minds(most days it is in mine too)
sweet Betty so good to hear from you. I was cleaning out my drawers the other day and came across a card from you. Please tell Paul that Coconut Patty in Hawaii always thinks of him and I am sending him a rainbow of hugs.
I believe Lloyd had moments of clarity (however brief) clear up to the day he died. I would rarely ask if he was afraid because I wanted to acknowledge that fear was natural. I would tell him there was nothing we could do about our situation, but that I would be there with him right up to the end. We both knew what would happen. It was unavoidable. On his last day I saw tears in his eyes. I told him to look for my mom, his Grandma, and his Grandpa and if he saw them, he should go with them. I lied and said I would be ok and I told him I would love him forever. My dear sweet love couldn't do a thing for himself anymore except walk. It was time for him to go before he got worse and I couldn't keep him with me.
This is my first comment on your website. Your blog is heart-rending and so honest. I have to say that until recently my husband was, like yours, more or less aware of his condition and I grieved over that awareness all the time. Now, while I think he is occasionally, it's more of a state of constant uncertainty and confusion, as he doesn't remember what he used to be able to do as opposed to what he can do now. Added to that is the fact that he can't really talk intelligibly anymore. I have to guess what he's saying; it's very difficult, exhausting to keep at it day after day. I would say my grief is a little blunted by his lack of awareness now. Every now and then, though, I find him crying and I know why. And I cry, too. For more on us, see my blog, www.dwindlinglight.blogspot.com. Thanks so much for making a space for spouses--a very generous and crucial gift.
I could have cried this afternoon. Today was the first day of our new caregiver. I asked my DH what he thought of the new caregiver - his response was "well you know I have difficulty initiating a conversation" and then he said something along the lines of "I'll do anything you want in order to stay here and not have you put me away" and I know from this that he is aware and resents having to have a caregiver if I want to go out, he resents not being able to look after himself so that I will trust him to be home alone. I could only hug him and tell him that I am doing everything I can to keep him home with me.
bqd yes its excruciationg to hear them finally be resigned to their fate. but yes the respite for you too is just as important. it will help prolong your time to care for him at home.
constance welcome to the site. you will find many caring souls here who know how you feel and can offer a helping hand or shoulder to cry on. lots of info on past posts as well.
Yesterday I took a dear old girlfriend that I had not seen for some time, to visit Dado. She knew him well from where we lived before. When we first got there, it took him awhile to register, and then it just clicked, and he said "Pam". He looked up from his sad little wheelchair and his beautiful brown eyes opened wide and he looked deep and long at her. Two big tears rolled out.
My wife lost her awareness. After each failing and loss (driving, bathing, etc.) she never mentioned or noted what was no longer there. It made it easier perhaps because the losses were only on my shoulders and I didn't have to see her pain as you have with Sid.
HOWEVER, the backside to having insight. . . . Although not discussed openly, my father MUST HAVE had insight on what was happening (to him and to his loved ones) and look at where that one ended up . . . .
Thanks Divvi and Nikki, and yes, Nikki it did rip my heart out (again). In fact i am in tears as I write this - its so nice to hear from people who truly understand! In addition to his dementia, DH walks with a cane because of a hip replacement he had in 2008, has psoriatic arthritis in his back, and has some balance issues as well. So I worry about him falling. In addition, because we live on a lake, I am afraid that he will try to go swimming on his own unless someone is here to prevent him from doing so, or to go swimming with him. My sister tells me I am being overprotective; my son thinks that I should do what I think is best to control my own stress level. In a way, it makes it somehow easier on me to know that my DH understands why I am doing the things I do - he may not like it, but he will go along with it.
after all I have seen and been thru I doubt there is such a thing as being overprotective with an Alzheimer spouse. but that's me. and that's to say just because they appear normal and basically able to function on their own, doesn't mean their brain isn't being affected and who knows when things wont click. and they get into trouble. I find it has always been an advantage to be prepared and vigilant to what issues can crop up without any notice. they may appear more normal to most but on the inside things are in turmoil nonetheless. go with your gut instinct, you are the one who knows them best.
Bonnie - Know that you are doing a good job and though we hate to see our spouses fade there just isn't anything we can do about it but keep them safe and comfortable.
Thanks Amber, I needed to hear that too! I try to do the best I can, but its nice to get some feedback that the choices I am making (to keep him safe and comfortable, whether he likes it or not) actually means I am doing a good job! :-). This is just so hard!!!!