What could we have done "better...?" Probably nothing. We just worry if THEY seem unhappy or discontent for any reason. Mostly, we just can't fix those things.
No point in worrying about what we could have done better. I believe that all of us here at Joan's are caring and devoted towards out spouses. Otherwise, we wouldn't be here--we'd be out there, living life instead. I am trying to strike a balance.
When we place our spouse in a residence there is a new dual reality which is very powerful. From full time absorption in caregiving on that wrenching day we give them up, we enter on that very day the physical reality of life alone. We do what may be the single hardest thing in our lives after the most exhausting period of our lives and immediately on that day are in a new hardship which the exhausted mind and body probably experience as relief beyond the concious level.
The second reality that emerges on that day is frankly hard to say. We have passed the work to a team of people to watch over them to which our role necessarily becomes secondary. And the reality is that they will likely pass in that residence. And while we are not waiting for them to die, the truth is that is what is happening and that truth preys on at least the back of the mind.
So while I'm watching my spouse deteriorate and helping as much as I can, I concurrently have to recoil from not being myself or having my life for years, develop some new life which is already in my face, and prepare in some way for her coming passing.
When we have trouble during this period we might want to remind ourselves of these facts.
When we had them at home if we got through the day we succeeded another day. Continuation was singluar and in the months that follow placing, continuation is completely different things.
One of those things which falls out from the combination I've said is that you will be faced with yourself. Not your lifelong roles, not your previous relationships, not even one continuum of experience where a person is themselves and then suddenly something happens to them - no, this person who looks back at you in the mirror has been tortured and over stressed and isolated and neglected probably for years. Hi there.
And the truth is that whatever is standing there looking back at you in the mirror is what you're stuck with and if you want my advice, it's time to really get to know that person and start treating her/him like a human being with some real compassion. You're going to be with that person to your last breath guaranteed so you may as well start being genuine and caring about it.
I am in my tenth month of being my own caregiver. I talk to myself all the time (sometimes out loud) without the mirror. I say "How are we doing Wolf?" and I mean it. I'm interested, I want to help, I genuinely care about me. I help myself with the horror of what is to come, and the horror of her state, and the strangeness which is my life these days.
I've already been through the hardest single aspect of this many times and I'll be coming back to it again and again. That is understanding that the true goal I believe in is that I am a fully engaged person somewhere down the road without domination that I was once a happily married man. In much the same way that I once had my mom in my life and now I do not.
I've recently fallen in love again. This person was under my nose the whole time and I never noticed them; but, we've become really close lately and I can't spend enough time with them. It's me. I'm taking myself out to dinner, and then we're going to watch a basketball game, and later maybe have sax because it's like they know exactly what I want. All I know is that I helped me in ways I never conceptualized. My X-friends were constantly under my skin. Forgive them. In fact, forgive everybody. Uh uh girlfriend, you too. Now let's go out. I don't want to. Well let's order in then and put on a fire. I'll make popcorn. And so on.
You're stuck with yourself. You may want to start being nice. Start authorizing yourself to be you. Allow yourself to want what you want. Help yourself with your feelings.
I don't believe the most over arching aspect of this whole experience is the experience once our lives are over and it's all taken into account - I think it's that it makes us face ourselves and have to start over.
I can't help that the last chapters of Wolf's life don't include Dianne. I'll always love her but I just don't have a choice about it. What I do have a choice about is what happens to that character in those last chapters and that means accepting that the goal is to get over things in their time while watching over her - and completely authorizing myself to do whatever I want with my life. And I am and it's working.
I wonder if one of the key's is coming to understand that you are enduring pain - not that you ARE the pain. And that enduring pain deserves respect; but, pain itself does not.
Wolf, You've got it! Now, the next thing---HANG ON TO IT. As we move through these times things will happen that distract our focus, even pull us back into the older feelngs and hurts. Be aware and hold tight to where you are.
Just as a physical wound has various depths and heals in stages, you keep it clean and promote healing. You do your best not to reinjure the area, and you don't keep poking/picking at it. Healed areas are fragile at first. they need time to toughen. The scar left behind is the proof of your strength in getting your LO through and in surviving the journey. The strength and survival that will carry you through the remaining chapters.
Well it is getting a little (& notice I said “a little”) easier leaving the Veterans Home after visiting Tom. I cried the last 2 times I left. He seems to be adjusting pretty well. When I come to visit he gets this extremely surprised look on his face & tells me that he is so happy to see me & that he thought he wouldn't see me again. I don't think he actually understands that he lives there & that I am not there with him. The nurses & aids say that he asks where I am & they just tell him that I will be there soon (he has no concept of time so that's a good thing). Today I brought him a sundae from Burger King & he really liked that. Then I sat in his room with him & I held his hand while we (I) watched TV. When he started dozing I decided it was time to leave so I told him that I was going to go to the bathroom & that I would be back later. He said OK & told me to drive safe. I usually stay about 2 hours. I am fortunate that it's only 10 minutes away so I can go whenever I want. I don't think that it's actually sunk into my brain that this is a PERMANENT arrangement. I hope that when it does that it's just one of those “a-ha” moments & not one that smacks me square in the face.
Gosh Elaine...your post could have been me posting it. That's exactly as it is here when I visit DH...some days are easy, some not. it's been over three months now for us, and it's a smack in the face feeling for me...it's like a nightmare I can't wake up from!
I'm posting at 5:50 in the morning because it IS a nightmare I DID just wake up from.
And I refuse to go back to THAT dream I can tell you. Basically I was driving around trying to get to her with no idea where I was, never getting to her, and every person I talked to was free with directions or even came into the car with me but I never got closer to her. Not an emergency, not racing, not completely lost. It's just that no roads went where they should, no road took me closer to anywhere, and for some reason I kept being in a different car and even on a motor scooter once; but, never finding and always not where I thought.
I have no life I belong to, no children, and no family that hangs out together or is close in the sense I am looking for. Everyone I cared about has been ruined by this disease or cancer and if I am ever to trust or open again it will be with a person who, as I write this is a complete stranger but would fit into the suitcase of needs I have. Lovely.
There's nothing wrong with knowing what you want and going looking for it. It's just that I would rather choke on a horse as do that because that's how I'm wired. The reason is that I get away with very little. If I go out and get a new life partner because I'm lonely - I will always know that and she would never have a chance of being 'natural'. For my kind of mind that's poison because the odds of me fooling me into believing something is true I already know isn't - are near zero. Besides, I will never treat another human being that way. Knowing I brought them into my life because I'm desperate for company (I am) and then when she swings her own weight around as she would have a right to - there the fallacy would be in my face.
It's perfect that other parts of my mind are so desperate they consider fire hydrants briefly as potential mates while I drive by.
And if you know how the mind works, imagine the conflicts inside when you add in that the welding torch of truth is still searing the back of my mind with the knowledge that whatever I am going through, she is there, she is in that condition, and it is going to get worse for both of us. That is the knowledge my mind is working hard on to soften, shock absorb, and deflect from. Poor thing must be exhausted.
Not to worry. I'm a combination of goofy, ghandi, and hannibal lector without the lunch. I have these dreams regularly, I know it's my way of thinking about her, I'm content to drive and chase everywhere hoping to find her - but when my x-friend lends me his car hinting we should make up - that's when I woke up. Uh uh girlfriend, you are a fake and this dream has crossed the line and snap I am awake. And here I am up in the middle of the night letting my own subconcious know that while I am not necessarily the boss here - some lines will not be crossed even when I'm asleep.
First hint of dawn now while those poor schmucks are driving to work already. I have the window open and can both see and hear the volume of traffic building. It's raining which is perfect and while I freely am on vigil over her as best I can, I will just as completely not be when her struggle with this has passed. In the meantime I had no idea I could ride a motor scooter like that and I can't remember who it was that was sitting behind me holding on to me. It wasn't her - she's who I was searching for. I know one thing. If that x-friend shows up in my dream again, I'm having him over for lunch. Hee-hee-hee.
Well here I sit crying. The Veterans Home doesn't usually call me, in fact the only calls I get have been from the Psychologist about his meds. But even so when I see the # on my caller ID I cringe & today I got the call I dreaded. The nurse told me that he was in an altercation with another resident. I asked if he started it & she said yes. My stomach knotted up. She told me that she has to medicate him & of course I told her that was fine. I asked her if she thought I should come to see him & she said that I should continue to do whatever I was going to do. I told her that I was bringing our Pastor there today & she said that was fine. I am so upset. I thought that he was doing so well. I am hoping that my favorite aid is there today so I can find out what happened. I don't doubt that he started it. Anything can set them off I know that there are a few residents in his unit that are ….whats the word.....volatile....well that's not the word, but it's the closest I can come. Anyway I'm afraid that he will be sleeping when we get there. Maybe I should just call my Pastor & tell him what's going on & see if he still wants to go. Just when you think life is settling down....BAM it hits you in the face. Thanks for listening.
Nothing's going to change how upsetting this feels right now but try to remember that you handled this all by yourself for quite some time.
Listen to the tone of the nurse which is 'just go on with doing the things you were doing'. It's you that is reacting and that's very understandable. The veteren's home sounds like they're just informing you.
If you want my advice because I've been there a number of times, don't say too much, don't try to apologize too much, and try to push your fears more into the background if you can and just get through this visit and normally as you can. You are now his advocate and some patients are more volatile as you said. My wife has had seven incidents so far in 10 months. Three times someone 'touched' her breasts. Once she was accosted by a man who thought she was his daughter. And three times she got into other resident's space and it was her grabbing that caused the altercation. It was horrible the first time because I was sure they were going to say they can't keep her.
Hang in there Elaine. Don't try to take responsibility for things you can't. Just support him as best you can and go back home trying to find your way. That's hard enough right now. Good luck.
Wolf, it's ironic that you were the first to respond to me because I was going to write a response to your post on the thread about visiting your DH at the NH. My heart goes out to you. You are a strong person. From your response here you DO understand how I feel & your advice was not only GOOD it was COMFORTING. I'm usually the one who apologizes profusely, but this time I didn't (& that was even before I read your advice). I knew that I had no control over the situation & you were correct when you said to listen to the tone of the nurse.........she WAS just informing me. I did go to visit him because our Pastor already made plans to go with me. It was a good visit. The aid who was assigned to him said that she wasn't there when the incident happened, but that it's just something that happens & they deal with it & then go on. She really made me feel better. Wolf, again thanks for the response. It's comforting to know that I can come here & KNOW that someone will understand how I feel no matter what the situation is.
I've been watching for you. We're not alone Elaine as you said and it IS comforting to know that.
Now take a step to taking this in and that you handled this too and see if you can't find something to do or watch or eat that you can be thankful for. I find that every little victory, every little moment if I pay attention and help myself (that's still helping someone remember) then I get that little bit stronger and that tiny bit more comfortable.
Thanks for your understanding about my own problems. We all have things to face.
Elaine...Wolf has given you great advice in his comment, not much more I can add to it. Only that it will most likely happen again, we had a couple of incidents like that...it's only now after nearly 4 months that DH has settled down and is calm as can be. I asked the staff if the residents talk to eack other, no one seems to talk there..she said not really they are more likey to put up fists and get into arguments.., and if they do talk, no one knows what anyone is saying..
Just go with it, and most of all don't apologize too much, it's not your fault I too think she was just informing you of what went on...and I'm glad she did make you feel better, you were not left thinking your DH is all to blame, that it does happen.
Elaine, having never experienced anything like this I can only imagine how you must have felt. I am relieved to hear the visit went well and that they made you feel better about the whole situation. ((hugs))
Thanks Nikki! One of the aids who has kinda "adopted" him says that she is keping an eye on him so that no one starts anything with him. Well our oldest son went with me yesterday to visit Tom. It's the first time he has seen his father in the Veterans Home. When we saw Tom I right away said, “Look who is with me, it's Jon!” & Tom said, “Oh I remember him, he's my good friend!” (He of course didn't recognize him as his son, but as a friend). We sat there with Tom in between us & as Jon & I talked every once in a while Tom would say something that didn't make sense, but we would just agree with him. I could see that there were tears in Jon's eyes, but he held them in check. We stayed about an hour & after we left while were in the parking lot Jon just cried. My heart broke for him. It was hard for him to see his Dad like that. Then today our younger son Patrick came to see him & the 2 sons went to visit Tom. They got there about 15 minutes before me & they seemed very comfortable being there. The four of us had a really nice visit & a few times Tom said, “ I remember these guys, they are really good friends!” Then he would ask me if I liked his friends & I said, “ Oh yes, I LOVE our friends!” The boys (even though they are 42 & 34 years old they are still my “boys”!) stayed about 2 hours & they left. I stayed a little longer. When I told him that I was leaving he asked if he could go with me & that is the first time he has asked that. I think he is starting to realize that I am not there all the time. The staff says that he is always asking where I am. When I told him that he couldn't go with me he just said, “Oh,” & just hung his head & looked so very sad. So then I told him that I was going to the bathroom & that I would be back in a few minutes & he said that if it was only a few minutes that would be OK. So I left & of course when I got to the parking lot I was crying. I was hoping it would get easier, but instead it's getting harder. Thanks for listening. I just had to tell somebody.
Awwwwww Elaine, my heart aches for you and your boys ((extra big hugs)) Be gentle with yourself, it hurts so very much at first. If I remember right, your DH has very little recall right? If that is the case, if he ever asks if he can go with you again, to avoid the sad face that breaks your heart, just say something like…Sure! I need to go to the bathroom first though ok?
If he is like Lynn chances are he will forget by the time you reach the door. I was sooooooooooooo grateful when Lynn finally stopped asking to go home. At that time he was so traumatized that he did have some recall, the first few months were pure torture :(
Now sometimes he will ask if he can go with me and I always says something lighthearted and upbeat. He doesn’t say home anymore, (he believes he built the facility and it is home) but sometimes he will ask if he can come with me. Yesterday I said sound great to me! I will take you anywhere you want to go, how about Disney?! To which he replied, well, no, I’m kind of tired. I guess I will stay here, but you have fun! Bless his heart. : )
I know it hurts desperately now, you are also in your transition period. Though it will always hurt, it cuts less deeply as time wears on. Love and hugs to you ((Elaine))
I said earlier that in July I went to my friend's cottage and got so caught up in all the family talk and chatter and things happening that when I went out to my guest bunkie to have a smoke I suddenly realized that I felt exactly like myself which at that point was startling. I had been swept along for so many hours without stop engrossed in all the people that when I looked up I actually said out loud "so you're still here".
That 360 degree sense of continuity and of utter familiarity I had spent 56 years with growing up was still inside and while that also threw how much I wasn't me these last 6 years into sharp relief, the truth was that I wasn't able to deal with that then and even though I remembered that moment and wrote about it here, I also ignored it and went back to my emptiness and strangeness trying to find my way out. DUH!
How much I've understood almost nothing about what I said I was doing and how much the obvious was there in front of me I will never forget now that I understand that. But I went back home and back to work at finding myself where I had stumbled across the goal and ignored it.
I ignored it because I wasn't ready to accept (which I also didn't know) and so in October I was still looking out my window very lonely and feeling that strangeness which a person feels when they have been pushed out of their center by stress and trauma and believes the survival of trauma is their normal or at the least is not ready to question that being in trauma isn't their normal.
We put our life partner away, come out of years of constant demands and home to a house suddenly silent, and don't recognize who we are, and begin life alone all on the same day. Talk to me about trauma.
What I completely failed to understand and failed to believe was that all the words I was saying were battering the target with facts that I wasn't myself, that I was under stress, that I needed time, that I had to accept the parts I could - while I utterly did not understand what that meant inside.
I actually had changed not by becoming someone else, but by being inside trauma so brutal for so long that the core personality which I had always been actually had been damaged to the point it hid and protected 'me'.
I was the depression and the reactions in a smiliar way to which soldiers are when their tour is over and they are wired to fight at every instant but are actually safe now. It takes time and some help to reconnect to the 'normal' person they were before. Not the same as before; but, feeling like themselves again inside at least.
I've worked on this. Admitting that I can't see my wife without strong and lasting reactions on this board was part of that. I did better than some in some ways and worse than some in others. What counts is that I gave all I could and some limits we have are real. I faced suicide in serious ways I hope never to again. If that isn't trauma I don't know what is. My doctor says I have burn out. I know I have limits that are dangerous to ignore.
And then some four weeks ago I got up and began realizing something was different. I thought I was having one of my good days. Except it became obvious everything really was different and it took me some time to recognize that I was completely here again. Just like for those few moments at the cottage in July. And the next day it was the same, and the next, and now almost 4 weeks later I am here telling you this confident that it's not going away. I'm out the other side of a 6 year experience of losing myself to the point where I'm back inside the personality I grew up with even though I have been the same person all the way through.
If someone had told me point blank that I wasn't myself I would have laughed that I already knew that. But I actually didn't know anything. Because I may have not dared believe I might ever feel normal again. Because even though I was shown it precisely in July, I was still too damaged to stay there and did not take on board the information that I really am still in here - just not ready to integrate back.
I think some people are so strong in themselves they never go through this and have no idea what I'm talking about now. I think some of us need real help and are trapped where I spent 6 years which is in the body but not ourselves because the very real trauma of a dementia caregiver is truth.
Time does heal. But only in the sense that a person gradually becomes aware that the active new hurting has stopped and that is it's limits. Without help that takes longer. And help is not forthcoming. Like the dreadful shunning that is accepted behavior where at the brunch next week all will fuss over our cancer friend but almost no one will ask about Dianne. All visited the cancer friend but no one visited Dianne. This isn't about me. I'm illustrating what I mean. That's even more true for the caregiver afterwards where the consideration by society is "patient heal thyself".
And here the patient heals themselves by being selfish to the point of actually helping someone in such a pitiful state that after years of ignoring their own needs and even repressing their own feelings and wants to a very unhealthy state for a very unhealthy period - now needs to find their own way back.
I'm sure some readers wondered what the heck I was talking about when I kept saying you need a voice inside that is in your court, that genuinely takes your side, that test and temper and learn to believe in. It's really just having thoughts that are concerned about you and your own welfare and learning to re-authorize yourself to have them and to take them somewhere. I've held court like that almost every day this year after the first month or so which honestly I can't remember. I think it was helpful in the sense that you need something to help yourself with or you've left it to time alone. The first conclusion that 'voice' came to was that it was ok that I care about myself. I had to relearn that. The pitiful truth.
My name is Wolf Krause. And I am an Alzheimer's survivor. I am not a caregiver. I am a guardian and an advocate of the only person I ever truly loved and while I can hardly breathe sometimes the empathy for her and the saddness I feel are so strong, I am no longer lost in the damage and by some grace I don't actually understand, I am again able to live all the moments together feeling exactly like myself and while I feel the saddness, the emptiness, and the lonliness - I feel them now from the lifetime of familiarity of what I am and they are all connected together into a single whole again. Can we ever feel normal again? Yes.
It's not that I thought that there wouldn't be issues after I placed him in the Veterans Home, but it seems that he has had a few “incidents”. Whenever anything happens where they have to give him extra medication they have to call me to let me know. So today they called to tell me that he woke up about 3AM & he went in another residents room & told him that if he didn't get out of his bed he was going to hit him. Well the other resident talked back to him & it ended up to only be a verbal confrontation, but they had to give Tom an extra dose of meds so they had to let me know. I know that there is nothing I can do about it, but I still feel bad.
Wolf--sorry, it's too early for me to read and digest your whole post. So I skimmed it. I still remember the day I was riding in the car, a song I really like came on the radio, and I felt a "strange" feeling. Then I recognized it as happiness. Never anticipated that feeling happiness for the first time in years would be a foreign event.
I was pretty overwhelmed to feel like I was back in my skin after not feeling like that for so long.
....
It's been a very tough week. Something was very wrong because she hardly had the strength to get up and shuffle around which is what she does. She had a bruise from falling but I've said and the staff agrees, let her walk while she can because once she's restrained - that's it. The next day she didn't want to get up and they suspected a fracture so they were going to take her to emergency. Then that became a problem because of the wait time then and no bed. So they brought an Xray machine in the next day and took the pictures. No fracture. She had no pain spots but something was clearly wrong. Now she developed a fever and that was steadily getting worse. So then we took her to the hospital emergency centre and the nurse by now suspected a urinary infection. Yesterday the doctor prescribed anti biotics and a tranquilizer and this morning he phoned and said the fever has broken and her vital signs are coming back to normal. They're going to keep her another day and then move her back to the nursing home.
That poor kid is 61. She looks 100 years old and is just over 90 lbs. And now she's starting to have the first signs of swallowing trouble. What a disease.
Sorry Wolf--Jeff had a similarly bad fall a couple months ago. He still has a weird bump on his hip, but no crack showed up on the x-ray. It is very difficult for these folks to be in the hospital, as they have no comprehension.
Emily, thanks. In some ways that's good. I don't know whether it's harder that they are completely cut off from comprehension and are helpless, or that they can still get some of this and help themselves at least a little.
It's been a very long time since I came to this site but I have often thought of the people here. Wolf, your posts always gave me a lot of food for thought. I'm sorry to hear that your wife had to be hospitalized. That is upsetting for anyone and all the more so with someone in this stage of dementia. I assume she is back in the nursing home by now. My husband has now been in long term care for almost 2 years and it has been a rocky road. In that time I also lost my mom. It was tough as she became more and more dependent on me and I was running back and forth between the two but I miss her terribly. There have been many issues regarding my husband's care but he is now on a different floor and I'm happy to say the care is better. Nevertheless I have to be vigilant. Because the home is so close to me I can go in every day to give him his meals. He is confined to a wheel chair, has not spoken in many months but seems more content where he is now. I feel he still recognizes me as someone special even though he has no idea that I am his wife. I sometimes get a smile when I get there and that makes my day. One of the reasons I have not been to the site is that I have made friends with a number of spouses at the facility and we have become a support to each other. We get together for the occasional meal, stay in touch by phone and look out for our respective spouses. I also have the support of Jan who posts on this site. We met on another Alzheimer site and have become good friends. I think I have finally accepted the fact that I would not be able to care for my husband at home. He has health issues on top of the dementia and it takes 2 people to do personal care and transfer him from bed to chair etc. That is not to say that I don't feel sadness for what we have lost and a lonliness that is unbearable at times. I will be having surgery in a few weeks and I am already worrying about not being able to see him for a while. Will he still recognize me afterwards? I have hired a caregiver once a week for a few hours and will have her go in more when I can't but that is small consolation. People say we have to take care of ourselves so we can be there for our loved ones but that's easier said than done. For now this is my life. I wish everyone here some happy, peaceful moments in 2013.
Dear Inge, it's good to hear from you again and to know that you are still coping well. You've been a member for a long time and a faithful caregiver. Your plan for a caregiver to go in and see your husband while you are recuperating from surgery is a good one and will give your some peace of mind. I feel quite certain that he will recognize you when you go back in. Also, it's wonderful that you have your back-up support group at the facility. Here's wishing you a speedy recovery. Thanks for letting us know how you are. You will be in our hearts.
Inge, thank you. It feels good that I might have provided food for thought. When we're trying to take a step everything we can use to help us is important. I've never been 'ready' to take a step forward. I just know I have to fight for my life. My wife is back to staring at the ceiling but now in the rolls royce of wheelchairs and with some newly hired private support staff. I hope for your speedy recovery as well.
Thanks, Mary and Wolf. It feels good to be here again, among friends who share the road in this difficult journey. I have a lot of catching up to do to see how everyone is doing. Like your wife, Wolf, my husband too has the rolls royce of wheelchairs. He is in it all day now instead of being put in bed in the afternoon. It means less stress on him and less danger of someone accidentally dislodging his catheter and causing trauma. He sleeps a lot now but still enjoys his meals for which I am thankful. You may have posted this already, but I will ask anyhow. How do you feel about the facility your wife is in? Ours is supposed to be one of the better in this area but leaves a lot to be desired. I have become actively involved in the Family Council and find some comfort in working to bring about change and make a difference for the residents.
We're very lucky. We have a good nursing home where the staff genuinely care. I feel for people that have issues because I know that would be very stressful for me.
My wife still wants to stagger but has fallen down too much and spends much of her time now in that chair. She eats well and I agree that's something we can be thankful for.
Willingness to get beaten up by the disease may arguably be a caregiver's greatest strength.
Unwillingness to get beaten up by the disease is the alzheimer's survivor's greatest strength.
My own experience is (along with Inge's) that contact with people is key to taking steps. The core is that the mind is engaged with ongoing reality and I know of no way to flick a switch so that that happens. Instead it seems to be little steps over time where the new things I do and think all have their own reactions and my moods and willingness themselves move around and sometimes powerfully.
I'm not ready to face my wife's death one bit. I think that if she had died and I was a widower this would all have been much harder because when I try to think of her having passed, I find I can't. I react powerfully inside. Instead I think this period is a chance to move forward in accepting how life is now for me and I also think everything I will have done in this area may help me later when I do have to live with that. Others may feel differently.
I can't tell how much being alone a year has helped me to face more things and how much the work I've done has helped. I know that both have though. I hardly ever feel 'good', but I'm also nowhere near as overcome or lost within myself as I was. I'm not looking for a sense of purpose yet or a new life I can be involved in. Instead I see it as reclaiming specific things I think I can handle and then working on that with the same seriousness of purpose we raise our children or perform our job.
It's all willingness and in my opinion that is one of the keys. How do I find and nurture willingness inside me?
I believe there are two pre-states about willingness. One is 'I want' and one is 'I should'. You will only get through the 'I want' if you authorize it inside and you're only going to get through the 'I should' with resolve.
I'm not a doer or a believer. I need to understand in order to believe. Other's have their own make up and it helps to know ourselves so we can either dig into understanding or know we can dispense with that because we don't listen to it anyways. For me, it has been surprising how much trying to face this new life alone has been about what I am and where I am. I wasn't looking for deeper self exploration right here where I'm trying to survive one of life's more difficult experiences. I'm finding I can't do one without the other.
However that sounds, I believe it plays out everywhere. Just dropping bananas which she liked and I don't was an emotional issue. When our lives have been entwined and that stops along with the damage AD does to us, it simply can't be otherwise.
For me I truly believe the first step was understanding and believing that I really was in a damaged state however much parts of me didn't accept that. And the second was critical which was that I wanted my life and to feel better. It's sitting right there and it's so easy to gloss over it. IF I am damaged but want to feel better THEN I'm going to have to help myself.
I swear to you that when I started getting up in the morning knowing that and believing in it, my life started to change and that has not stopped. Whatever happens in each day I have come to a much deeper understanding, resolve, and willingness inside myself that I am on a journey of feeling like myself again and being engaged in life again. Whatever else is going on the primary thing on my mind each day is helping myself.
Understand that to continue where the loved one can't feels wrong by the nature of the damage. Understand from that, that fighting that feeling is health.
And how do we test that? By sighting the positives (which are what has been damaged mostly) such as that we are laughing, or amused, or feeling inside like our normal selves. Can I truly tell what my normal self is right now? No. That's a ridiculous notion. The insane do not assess themselves and neither do the clinically depressed (pick your own description).
And as insane as it may sound, my goal while my wife is in a nursing home staring at the ceiling is to laugh at the same time as that is happening. Camus or Fellini would love this. But either I’m a liar and I’m not trying to become normal again; or I am; because normal people laugh.
Some people move into a new relationship. I won’t. But I am moving into my new life without waiting for my wife to pass and that is too quick for others. I’m making no far reaching decisions I don’t have to; but, my wife may continue for several years and my conviction is that I live now.
Understand that I spend most of my time missing my wife and sighing and that I’m a long distance from what I would call normal. That just isn’t the topic here. It’s connected in that in order to reclaim anything I have to learn to enjoy it and accept her absence from it now.
I don’t want this life. I don’t really have any interest in going on without her. I’m stuck in this reality. So I’m working to accept it having no other choice (suicide is out). I refuse to live a false life though and so living without her means I live the best life I can and she’s not here.
When I finally get to here and I believe everything I said and I am dragging my arse around in a heap of misery - then either I get busy or I am a liar. I hate liars. I understand most who lie do not know they lie by the nature of what lying is - but I do know what a lie is and I’m having none of it.
I move on. I do that by feeling inside that I’m being true to myself and then help myself do whatever I want and can afford. Dianne and my God can judge my love and truth at anytime. It’s a crazy world. At least it seems to be. I didn’t invent it.
In long talks with the nursing home, I've learned that with my wife's strong body and young age, it's most likely that swallowing will be the next thing to go. She has recently lost her ability to stand and walk coherently which was a shuffle and a lot of falling down; but, she could manage it and had a need to move around. I tried a hockey helmet and a bicycle helmet but the straps were dangerous for her in both cases. I stubbornly refused to take away her mobility though until her own mind took it.
What's clear is that the most likely path is the day will come where she can no longer swallow food and while that is an evolution there will be a day where the staff is telling me and I can see that we can't get food down her throat. On that day the next sorry chapter of this particular tale begins where I will not authorize the external feeding of her nutrients and will instead stand by her while she starves to death.
In a fully compassionate society I would be ending her life in a millisecond where every pet owner knows there comes a day where we are only condemning them to suffering by not taking that responsibility. And while I accept this is rightfully a contenious subject, I point out that society is comfortable with me condemning her to starve to death - just not instantly. Whether I do the thing by omission or action is a pedantic stance.
Nevertheless, I will abide by her wishes and let her go in such a state with no chance of recovery. Those are the exact words we talked about several times. What would you want me to do? Let me go. I'm sorry to have this responsibility and I take ownership of it.
I'm over my reluctance to see her. I told her brothers and sister of my decision and offered them a chance to challenge me including the two nephews who have been involved. Family has that right in my world. Ultimately it resides with me and if that quite likely day does come, I will apologize to her and once more tell her the truth which is that her body has decided her life ends soon and I have decided not to interfere with that.
They will go all the way to morphine injection to help keep her from pain. And it is more likely than not that I will live with this soul numbing experience unless she can manage to die of something else more quickly which is not likely given her age and still strong body. What a disease this is.
As I said in the post above, I'm long past wondering if I'm going to survive alzheimer's. Depression left bored. It can bite me. I choose life. Sorry kiddo, but I'm seeing this through with you and then I'm moving on. If there's such a thing, you're welcome anytime.
Wolf, my heart aches for you. You express your feelings so well and the results and consequences of those feelings, as well as actions. You are in my thoughts.
Thank you Vickie, but my thoughts are with you and with the others. I have already been blessed.
I doubt I could find it but my very first post talked about the spirit and whether it can survive this and the answer is yes it can. I'm my stinking self again and I can feel that everything fits like a glove with lifelong familiarity including what we've been through. It's just all up to me like it always was.
I'd kiss the ground in gratitude but I haven't vacumned in months.
I credit my studies in philosophy. Namely one of my first hundred true loves, Hayley Mills in Pollyanna. She said a profound thing which I have remembered ever since. She said that if you look for the good in a person you will surely find it. And if you look for the bad in a person you will surely find it.
You find what you are seeking. More profoundly perhaps you admit you actually play an active role in what is being sought. The trick may be to get up in the front seat behind the wheel and guide that seeking. If that's the case I would be charged with reckless driving. But; I do not accept living with this. I will only accept accepting this with a willing heart and forgiving everyone. Everyone. Even Al Zheimer. And even me. I choose love. Specifically learning to find love and therefore happiness in the life I have which has nothing whatsoever to do with another human being. The single question has always been: does the sorrow extinguish the love of life? Pollyanna provided me with that answer. Which is (I'm sorry) it's entirely up to me, I'm already doing it unconciously, and it might be an idea to steer.
I don't think it was being a nutbar that helped me specifically. I think it may be more that I never really grew up. I'm a 62 year old child and I'm home alone. I think an even truer comment is that I've never been bored. I can always find something to engage in. I'm not talking about me, I'm trying to illustrate 'types'. I think that matters in how we approach what may be successful for us. And what is success? To laugh of course. To feel ok inside. To be content. To relax. To look forward to things. Not fanatically. You know, normal.
At any rate I promised myself to write shorter posts this year. Thank you Vickie. I know you've had a better day. I send you my warm thoughts in return and in fact to everyone who reads this. Ask yourself this. If you were going to be childish what would seem like fun? Don't forget the child you were never died or went away. All that is still inside you. Just may not be allowed to speak. Some things never change said the child who became their parent. Just my opinion.
Finally I leave you with an image. Dianne had a very quick draw. She could fling her top off in disgust and shoot it across the room faster than you could blink. More than once I was suddenly sitting there with her top drooped over me. I'm willing to sign an affidavid. That's right ladies.
Wolf, you mirror my thoughts and feelings so closely, it's eery. In some ways I have it easier than you, in that my husband's family has long ago disappeared from his life. The only family I have is a son and we share our feelings on end stage of life. Keeping my husband alive by heroic measures would be disrespecting his wishes and we will not agree to it. That being said, the idea of watching him slowly starve to death as was the case with his sister is terrifying. We are older than you but I too hope to have life after this is all over. In the meantime, my life is with my husband, daily, whether he knows me or not. Thankfully, the staff in the unit where he is now is much more compassionate and he is receiving better care. That makes this journey just a little easier.
I am slowly joining these ranks, much sooner than I thought. Dado has been in hospital long term care for 3 weeks now, and they are flailing about trying to find a place to" take him'. Hopefully soon, they do take good care of him there, but he needs more buddies. and activities.
As I was leaving today, and asked why he was crying, he told me, " I am scared" I, cannot forgive Al Zheimer, I hate him, I hate him for what he does, cruel and thoughtless.
Thank you Wolf for starting this very special sticky. And how I love Dianne flinging her bra, you know I think Canadian women do that more than anybody. I am going to do the old slip it off under my shirt, and fling it at the cats, in honor of her.
Wolf, I felt a lot of what you are feeling and have felt during the 2+ years my husband was placed. I even had the "can't find Joe" dreams that were a lot like the one you described, except I was walking in what was probably the Bronx in the 1950s when I was in the dream. Back to what was my childhood home, I guess. The dreams stopped when he died. I haven't had one since August 1st.
I, also, recognized I was no longer the caregiver. I was the advocate. I did my new job as well as I could. I talked to staff every time I visited. I went to care conferences and there were times I was the only one there. That actually happened with the last one, but I saw the hospice nurse who had just arrived (not for the conference) and the two of us talked for 20 minutes. It was good enough. She answered a lot of questions that wouldn't have gotten answered if there had been a bunch of people.
And I needed time to stop being numb. And I needed time to relocate my old interests and start working on them again. I'm another that is never bored. There aren't enough hours to do all the things I want to do.
Starling* it is so good to see you posting and I am gleaning so much comfort and knowledge from your posts. Please keep it going.
The dreaming is interesing, and wow things really take time don't they. Even though things have been resolved to a much better outcome that I could have ever hoped for, I still wake up every night at 2 am, and think that I am back 6 weeks ago when Dado was taken to hospital. I wake up in fear and worry, and then, it dawns on me that it is all taken care of, he is comfortable, and I am only a mile away. And then I feel my heart warm.
Reading here on all the intense grief of placement has been so eye opening. How we love our mates so.
I hope this isn't to long, but I want to tell you something that happened to me that just might benefit some of you. In the process of applying for Medicaid when my DH was placed in the Veterans Home I had to get our life insurance information, because when you have a whole life policy & it makes money with dividends, the dividends are considered assets. I have an insurance folder that I just throw any correspondence that I receive from our insurance companies in. While looking in this folder I decided to actually read some of the correspondence (& I'm glad I did!) One letter (dated 2001) told me about a benefit (at no additional charge to me) called “The Accelerated Benefit Rider” which allows us to receive up to 80% of the policy's death benefit if the insured is diagnosed with a terminal condition or “enters a qualified institution for permanent care.” Well this policy was actually a term policy & it was for a substantial amount. We took it out 15 years ago to cover a large percent of our mortgage when we refinanced. I called my insurance lady & read the letter to her. She helped me fill out the paperwork & long story short, I received a check for a substantial amount of money. Enough so that I just paid off my van & some credit cards (& yes I saved enough to pay the tax on it next year). I guess my point is that those of you who have LO's in a NH might want to check your insurance policies for a benefit like that. I know that God directed me to read those old letters, because I didn't know how I was going to pay for our bills & the Veterans Home. I actually thought that I was going to have to declare bankruptcy & possibly sell my house. Now I think I will be OK.
This new grief is kind of a "silent grief", except for all of you here. Now that Dado is in a home, most of the people that know me really figure it is time to "move on", kind of like out of sight, out of mind.
I know that I also suffer from PTSD, and still, still, am battling this horrid sickness that started 2 months ago. The lungs seem to be getting better, but my ears are still plugged and sinuses hurt.
Yes I am getting rest now. But, I cry myself to sleep every night. Yes, I do not have to take care of him, but, I smell his clothes in the closet, and look at all the work he did in the yard, and my core of my soul cries.
I cannot get the picture out of my mind, (maybe don't want to), of the other day when I got him to stand up, and wrapped my arms around him and squeezed tight. His arms hung limply at his side, and he giggled an eerie sound. Oh my darling where are your thoughts?
I will not try to understand why others cannot see that I grieve, that yes, of course I am grateful for all that has transpired in this new transition, but, I just cannot go on with life each day, and not think of him. A friend was surprised the other day, when I said, I miss him. (???)
As I know no one here, that is going through this with me, truly only YOU grieve with me, and totally understand. Thank you.
(PS Wolf if you read this, I read it was your anniversary dear person, and was thinking of you and Dianne.)
Coco--the post-placement adjustment takes a long time. There is no putting it behind you. Your life will start to adjust, and you will find you can do some things with your time that make you glad, but there's plenty of trauma and sadness and you're very normal.
I agree. It takes a long time to adjust. I've been fourteen months and it has gotten better although bad moments and falls into a well of pain still happen. But I can laugh and mean it and I can smile and mean it and it feels more normal as the months pass.
The shock early and the trauma we feel, just coming to comprehend that the constant demands are over, somewhere thinking like yourself and realizing you haven't for a long time. It will get better with some time to go through these things but there were many memories to deal with and layers of coming back more fully I'm not through yet. As my friend said, when you're not thinking about this THEN you're normal. We know what he means.
I remember when you came on this board Coco and how afraid you were that you would be strong enough. Well, you are. And now you need some of that strength for yourself. But I think one of the secrets is to be able to feel the love. It's there along with the pain and the sad thing is we are often so brutalized by this truly horrific and long experience - that feeling love and emotion again are a long way away.
If a loved one in our life suffered through being a caregiver to this disease we would understand immediately how hard that would be to live through and that that person would need real help to recover. We would feel serious compassion for them. But it's you [saying that to yourself] so forget it.
I just got back from my visit with him, and logged in to see that I had an unexpected response to my post.
It is really making me cry, thank you Emily and Wolf I so needed that love. I did, read every word when you started this sticky Wolf, and ached so bad for you, and for all of you having to place your mate. Never at the time, really thinking I would be doing it. Despite the ability to be able to take off a few more months from work, and the blessings of the place he is in, I feel, so hollow. Where am I? I do believe I will smile more again, I think I do believe that, and to laugh loudly and be carefree. I think I believe that. I wish it could be like a story, in the movie The Notebook, where I could be near him and have him pop back to normal briefly, and then we could transition on together. Stories.
But reality now is, (and yes Emily, I believe you, I believe you it will take some time,) reality is I am just so damn sad and feeling like life as I knew it is over. Oh how I hope I can continue to grow, and not shrink. And I so want to be able to be a good and fine example of strength and rightness to others here. Weird now, when I read what our friends on here are going through in the earlier stages, and the harder and harder issues with home care., I can hardly believe I managed what I did.
I am going to open a beer, and then maybe another. You all mean so so much to me.
Have your beer Coco and I'm joining you with a glass of wine. Though I am not yet at that oh so painful point of placing my DH, I am here in support of all of you who are on this particular path.
I hate that movie! Literally just hate it. I remember lying in bed with Lynn and just begging God to please, please take us both.... yeah, life is not like the Notebook at all.........pffffffft!
Here we are four years later and my pleads to God are much different. It does get better dear Coco, I promise you!! I imagine you are a lot like me, a lot like most of us, what you are experiencing, that hollow feeling, that's mourning. It is a drastic change not having them home with us. The separation seems unnatural and in many ways, like a death of all we knew and loved.
I grieved hard and long, it wasn't until I realized it was actually mourning, and let myself feel the pain that I was able to work my way through it. Be kind to yourself dear one. People can be so insensitive (and stupid!) They simply can not understand what we are going through.
Of course you miss him!! I am sorry for the heartache I know you are going through. You are deep in my heart, much love and ((hugs))
There's the mourning, the hollow feeling, and then an ongoing stress response to the transitional aspect--what is your life now? What is there that you need to do, or want to do with life? I don't think we have good words to describe how difficult on our psyches and systems this kind of life change is. And that after the acute and ongoing trauma of dealing with AD 24/7. Time, time, time. And relaxation techniques. And lots of patience with ourselves.
If it's of any consolation, this period of time, while your LO is Placed, provides a period of rest and readjustment, which I found to be a blessing, before I had to adjust again when he passed. I made it work to my favor, making it a stepping stone in navigating the Demetia Road.
Coco--I agree with what the others have said. Use this time to work on your own physical and mental health, doing things that are fun for you, etc. I am sure you gave much of those up while caregiving in the home--I know I did. I have healed quite a bit and calmed down since placing Steve 20 months ago. Will I grieve more as he declines and eventually passes--sure, but I think I'll be stronger and better able to handle it now.
What is life? Is it the role we are playing? Isn't it true that when we play a role we are serving it and when we are a role it is serving us? My poor cancer friend and his wife are great people but after 35 years it's still "my husband" and "my wife". Isn't a role like a job and should be like a job and a person is like a person and should be like a person? Apparently not according to my sister who calls my BIL 'pops' to me. He's not Al, he's 'pops' even though he's not my pops.
I never grew up. I have no use for being an adult. That's a role. I can substitute the word 'responsible' and never use the word adult - and no one notices. The thing I noticed about adults is that they lie a lot. In fact often they don't seem to know that. My mother and father went at it at times and my father was a tough SOB. My mother must have said she should leave him dozens of times like a mantra. But when he passed in that nursing home she kept his voicemails for almost 5 years.
Is life about changing? We change as we get older people say. What a joke. We adapt to the changes but that sense of you inside hasn't aged from the second you emerged to now because that's the soul and anyone that can tell the truth knows they don't age inside. The body ages which is why the mirror is a shock. It isn't a lie that we don't feel older. We're not older - our bodies are. This is not a different you - it's just later in time. The obvious truth of that also has repercussions to the argument of the existence of the soul but that's a different topic.
Is life about our feelings? Then why does everybody remember exactly the same events differently? And why does almost everyone change their memories? We shape them and they shape us except the chicken and the egg are very difficult to tell apart. Most people think Dianne and I were like the perfect couple together and it was ridiculously easy to get along - but my journals which I kept for some dozen years over the fourty plus tell a different story. They are ripe with a self absorbed person growing older thinking mostly about himself - me. And they document dozens of disagreements which I had blissfully not only forgotten but wiped with the disinfectant of my feelings.
I know life isn't about thinking. I'm certain and that's all I'm going to say.
So, how does a liar armed with a playbook re-written so many times it's streamlined into the twenty greatest hits of all times, face a new future that's real? He doesn't. He changes the playbook. He knows how.
This is all going to come out in my upcoming sessions with the psychologist I'm seeing because the nursing home asked me to. I welcome talking about me. As I pointed out last week the two hours is the most I'd talked to anyone in 5 years about it. But I politely declined the offer of a new addiction and a new layer of buzz in my thinking I don't actually think would be helpful.
I'm in anguish because I love her and I'm consumed by it because she is consumed by it and I'm in the middle of this horrific ordeal - not on either side of it. I'm also appreciative of talking about it all and having some attention paid to me (downright alien). But I'm not having issues with reality and I can write a detailed thesis why that's true. When I have seen this through with my partner then I will go on as I am already doing.
Which quite frankly is giving the keys to the car to the child and saying "here you drive for a while".
I gave the pychologist a long list of self appraisals where remembering I had cats and a cat box that needed changing has evolved to a new catbox arrangement (better for them) and a higher quality diet. Her mother's violets are blooming. I know I have a christmas tree in my window. I'm dusting. I eat fresh fruit. I entertain myself part of the time and I engage part of the time. I do my work which is to be my own nurse and I'm gradually getting better not worse. I was here opening up I pointed out. (I'm good at deflecting she said)
I am. But I tell the truth. And the truth is I have a new life that is mine alone to shape. And anyone that has read most of my posts here knows I did bring out the child which means the true me what I honestly think and what I honestly feel. And that truth is missing her and feeling lost gnaws into the bone. And another truth is that for the first time in my life as an adult (hee-hee) I am already facing life as me. Whatever happens and whatever doesn't happen - it's me, myself, and I.