Another learning experience ! The nursing home scenario.! How much time is beneficial to spend with spouse at the home? I have been going every day to visit him and spending 5 to 6 hours there every time - with the exception of one day. I like to be with him, but I am not having a life. He begs me to stay longer. My friends say I'm spending too much time there. It's hard, as you all know, to see him feeling abandoned. He has a nice room, plenty of food etc. He's only 2 blocks away so it makes it easy for me to get there. I had no idea it would be this painful. Especially so when he asked me if he had to stay there 'til he died. I look forward to hearing from some of you . It would be interesting to hear how you delegate your time there. Depending on the situation, of course.
If he is so close, maybe you could pop in for shorter periods multiple times per day. That way he might take it better if he thought you would be back soon. Then you could cut back gradually.
Linda, that is so wise. Why couldn't I have thought of that? This is such a beneficial discussion place. I try to tell others about it, but I get the feeling, with one exception, that they don't hear me. Thanks Linda!
I don't have an answer, but I want to thank you for starting this discussion. I think many people have struggled with this. You're in between two worlds, trying to have some kind of life outside of the nursing home, yet not wanting your spouse to feel abandoned. I've thought about this for when my time comes.
As with so many issues and decisions related to Alzheimer's Disease, I'm guessing the right amount of time is whatever you settle on as comfortable for you.
midwestmn, you are very fortunate that you are so close. I am only 10 minutes away & I feel fortunate too. I try to go everyday & I usually stay around 2 hours (give or take a half hour). I went yesterday & stayed almost 2 & a half hours because I didn't think I'd get there today or tomorrow because of the storm (we have torrential rain & high winds). I probably won't get back until Wednesday or Thursday. You have a different issue than I do because my DH doesn't actually realize that he lives there & that I am not there all the time. He has no sense of time so when I visit him & he sees me he looks surprised & says, “Oh, I haven't seen you for so long!” We either sit in the common room or his bedroom. When I leave I tell him that I have to use the restroom & he says, “OK be careful & drive safe.” I sometimes feel so lonely........but I'm lonely for what I had.
I know what'cha mean. Sometimes, when he's actually sort of aware of me, it feels so nice to sit and hold his hand and that makes me think "Why can't I just keep him?" But that's not realistic, and I know it. I'm grateful for what I'm able to pull off, care-wise. Humbled, really, these days. Terribly appreciative of the people doing the majority of the work.
Midwestmn, you are more than welcome! Thrilled to have come up with a good idea on my own. I guess I may not be getting AD by osmosis after all! Hooray!!!
I have such admiration for all of you who have placed your spouses. Nothing is easy with the decisions we all have to make. And, even after making the decision to place there continues to be concerns and other things that you have to consider. There are so many differences involved because no two cases are a like. The only thing common to all of us....the road leads only one place.
Emily, you voiced exactly what I feel. I KNOW placing him was for the best (his & mine), but when I sit & hold his hand & he smiles at me & tells me he loves me I think that “maybe I just didn't try hard enough.” I know that isn't true either. I also have the utmost respect for the staff taking care of my DH. I am getting to know them & for the most part they are dedicated people.
Elaine, that quote of yours " Maybe I just didn't try hard enough", hits a wound in my heart. I try to minister to it by focusing on the positive affect his placement has had on me. When I was gone one day with a friend it was such a joyous occasion. I felt like a weight had been lifted. I think we (you and I)are worth more than the expense of having them in the home. but for one whose family has always come first it's hard. And I look at the fire in the fireplace by myself and it just isn't as enjoyable now. I do find my own company good. But having him here quietly even without conversation (of which we no longer could have much ) was a satisfaction. Elaine, I hope you have come out of the storm unscathed!!!!!!!!!!!!!!
Oh midwestmn, thanks for being concerned about me. I DID come through the storm unscathed! In fact I didn't even lose power. For me this wasn't as bad as Isabel last year.
Yes, I have always put my family first so it was hard to “give up” taking care of DH. I also have to admit that I feel that a huge weight has been lifted off my shoulders. I would like to say that I miss his company, but for the past few months he has been so angry that there was a lot of tension in the air. Now when I go & visit him we sit together & hold hands & he tells me that he loves me. I have to tell a fiblet when I leave, but he seems fine with that. All in all we BOTH seem to be adjusting.
midwestmn, my e-mail address is in my profile, please e-mail me.
Great Elaine! I'm so glad you are alright. You don't need anything else to deal with. I tried to email you but it wouldn't go through. I am pretty dumb about copying email addresses correctly. I see that I don't have my email address in my profile. But I don't know how to remedy that. Hopefully we can solve this! I just came from the Home. He's really confused today.
midwestmn, you opened discussion for a very timely topic. During weekdays I try and stop in most days from about 5:00-8:00. .Get through dinner time and then on to getting ready for bed, etc. .It is hard for her at times to have me leave, but I find she becomes more content if I promise to come back again the next day. Fortunately, am within 10 minutes and very accessible. Still working full time in higher education, so I often bring along papers to read and grade. .Stuff, that I may otherwise put on the back burner. She seems content to just have me there and keep her company while I tackle some paperwork. I agree with Emily's sentiments. .well put. I know I am not going to be able to keep up the daily regiment of daily visits, but it seems to be working for now and .Midwestmn, are you from Midwest MN? I only ask because I am in that area as well. .
This is very difficult for me to admit but it might help someone else if I do. I rarely go and visit my wife. She is 9 minutes away.
I held on to her until she was incapable of speaking more than the very occassional single word and the nursing home said it was very rare to get someone so advanced. I said this to make myself feel better but it is true.
When I go and see her in this state it feels like someone is sticking an electric cattle prod into my brain. She will walk right past me or walk with me for a while and then just turn away and shuffle off. I've talked to professionals about this and am assured it's ok that I don't go. That I have 'burn out'. That I should listen to my own survival needs. I keep re-writing this because I can hardly stop supporting myself in this. Excusing myself. I am deeply ashamed and horrified that when I demand of myself that I go and just feed her lunch my whole body reacts, I can see my mind twisting almost violently reacting and I end up not going.
I think about her every day. I apologize to her. Carol has put me back on my feet so often about this(thanks). And I don't go because I can't. I talk to the nurses regularly. They know how much I love her and even the social worker has cried trying to reach me that it's ok that I just can't.
No one alive can get between the bond we had and I know that if she passes and can see into my heart she will know and understand. I tell her in my head "I'm sorry kiddo but I can't do this part" and I have no choice but to live with that because all those things really do happen inside me - and my hands are completely full getting through the reality of the truths. This has happened to that poor kid who has just turned 60. This has happened to me and shredded my life's meanings. And this has happened to us where 'us' is no more.
So if someone who reads this is having such a wrenching time with this - you are not alone.
And if you go and visit your spouse and feel it is not often enough, understand that at least one of us can't face doing it at all which is me - so you're doing pretty good.
So much of this depends on how aware the spouse is, whether they recognize you, how much you can interact with them, etc. Steve still knows me, but has no sense of time--he is completely in the present. So he's happy to see me, but I don't think it matters whether I stay 1/2 hour or 2 hours. It's really about how much time I need with him, rather than vice-versa. Generally, I go every day and spend less than an hour. It does seem that when I come back from a trip, he is extra affectionate, so maybe he missed me? The staff members say he's a little more agitated when I stay away for a week or more.
Oh, this is such a good release to hear some of your situations! I agree with MarilyninMD about you Wolf. Arms around you! This is one time that you have to go by your inner feelings. You can't act on how you perceive others think you should act. And I, of all people, should remember that. It would be best to not end up with conflicted feelings. That's probably not possible for most of us though. Yes, Sundown, I am from the midwest.
I think the way you are handling this situation is perfectly "normal", your normal. At some point one has to protect ourselves from that searing emotional pain that hurts our heart so much. There is such a thing as a "broken heart syndrome" and it sounds as though seeing her now in the state she is in is bringing you as near to that as anyone possibly can be without dying from it. You have to protect yourself. I use to say that I had to put an emotional "cold" wall up between me and my DH or I would die, I knew this to be true because of how I felt, it didn't mean I didn't love him, it meant I loved him so much that his disease was killing me. I protected myself from "feeling that horrible emotional pain" and that is what you are doing too. It is okay, and I know your DW would want you to do whatever you had to do to take care of yourself. She is well taken care of, and sometimes that is all we can and should do for them. Hugs.
What I thought about, after reading Wolf's comment, is that it probably helped me, in a way, that I had already managed a bit of the "emotional divorce" prior to Jeff's placement. Not because I wanted to, but because I already felt the loss of our emotional connection SO keenly, that the only form of self-preservation I could muster to manage the years of caregiving, was to force myself to be a little "emotionally cantilevered." The emotions of losing him were and are still there, but they usually live at a stratum where I just tried not to go if I didn't have to. Hence, at placement, I had already learned a trick. I'm not saying it's a good trick, or a healthy trick, but I did seem to need to be able to do it. So, visiting him now would be an entirely different experience if I hadn't already learned to wall myself off from certain emotions. I suspect Wolf, that you haven't really done that in the past, and are now doing what you must to cope.
Yes, arms around you Wolf...I love your honesty and writing things as you truly feel. I too am having a wrenching time of it. I want to go and see him, but then I think about seeing him like he is now, and the getting away is so hard. He's only 10 mins away...I try to go at least every second day for an hour or so, but I'm finding it harder and harder to go, and look for excuses not to go. There's never a time that I don't walk out of there in pain and tears. Yesterday his old work boss and wife came with me to see him...he was so happy to see them, at first i think he didn't really know who they were, then he seemed to remember them. The whole time they were they the wife sat on the bed near him in his chair, and he held her hand the whole time, he looked so frail, ot took all my being not to break down...
When DH first went in (over 3 years ago) I went often. He always wanted me to stay longer and would try to follow me out. I would always tell him, I'll be back in a little while (which could mean two days later) and that seemed to satisfy him. At some point, with the guidance of the doctor and staff, I determined that visiting him too often was making his adjustment worse. So I started going about every two weeks and it seemed that he was less attached to me. It hurt but I knew it was best for both of us. Now, he doesn't know me or seem to care when I visit. I have stopped going to see him and stay in touch with the director of the NH as to his condition, etc. I feel some guilt but I know that he is in good hands (this is the third and final AF he has been at and it is by far the best). I sometimes feel like going and then as I think about it I start to get a knot in my stomach, a sadness and then anxiety. So I go very, very little, less than once a month. I try to think of him as he was and reconcile the fact that although he is alive, he is gone. I can't say I feel 100% good about this but I don't want to operate on guilt. I've done all I can for him and I need to focus on my job and the rest of my life and believe that's what he would want for me. Thanks to Wolf for his candor.
Midwestern, there is a phenomena (can’t recall the name of it) that happens with some dementia patients; if they experience something traumatic, they are able to somehow retain that information for a period of time. This is what happened with Lynn. Before placement he couldn’t recall my name! Yet the trauma of placement made him very clear, he didn’t call me Nikki like he always had, but by my given name Nicole. It was the strangest thing…..He did not want to be there and our transition was the thing nightmares are made of.
I felt I needed to be there for him, and in truth he truly did need me to be there with him. The only way he would stay was with the fiblet that I needed to be there for testing, and would he please stay there with me. This worked because he at that time was somehow able to remember all the surgeries and testing I have had to have done. For me he would stay, and I had to do this last kindness for him, even if it killed me.
But it is a double edge sword…. His transition was difficult! He would pace the halls with our photo album… when he would see me, he would drop to his knees, tears in his eyes, saying “thank God” ………….. acccccck!!!!!!!! After the first couple of weeks of 8 or more hour visits I could sense that being there that long was hindering his transition. I decided to only stay 4 hours and he was more rested in-between visits.
Then I decided to skip a day, sure enough when I went in the next day he was not pacing the halls. I found him in his room, laying on his bed watching TV. A man can only pace so long. In hindsight I can see that being there so much at first made his transition harder on him. The phenomenon faded, he forgot he wasn’t home and he thought I slept upstairs with the other ladies.
In February it will be 4 years since placement…… I can hardly believe it as I typed that! Unless I am ill or having surgery I still go every single day. I am lucky in that Lynn does still know who I am, (on some level) And now since putting him on Marinol, he is able to communicate and express his love for me. Our visits are fantastic!!
I take him to all the live music shows, (at least 3 a week) and when there isn’t a show, I pull out the CD’s and sing and dance for him. He loves it! Music therapy is AMAZING. I help with his restorative care and feed him at least one meal a day. My average visit is 3 to 4 hours.
But I can certainly relate to ((Wolf)) and ((Maggie)) There was a brief period of time when I was so consumed in grief that my doctor suggested I only go in once a week. It didn’t help me at all, I needed to be with him.
The thing is, we are all soooo different. I immensely enjoy my time with Lynn now. This is what works for us. What will work for you will be completely different. The measure of how much one loves their spouse is NOT directly related to how much time you spend with them in the nursing home!!! … There should be no guilt, just the knowledge that we did the best we could in this impossible situation.
Honestly I don't know how people do it without a support system like we have here. I am finishing up papers and deciding the big question...and trying not to hedge on getting it done. Dado is almost too much to handle., yet it is when he cries and tells me he loves me then I falter. He is right on the edge of "leaving", I can tell, when he says something is wrong with me, and, I'm scared, oh God how do we do it.? The wall that Blue talked about comes in real handy at those times, and I am able to use it .
If he gets in where I hope he does, it is really close , it was the only reason I could really move on with placement. I do hope it all comes to fruition, and that I can do the absolute right thing.
I echo what Coco says; how do people manage without this support group? Thank you all for your honesty. I had also built the 'wall' around my feelings of grief, loss, and sadness, but I'll try to take Nikki's advice and add windows. My thoughts are with you Coco, as you go through this process.
Every single aspect of this disease is heartbreaking, each "stage" bringing yet more loss and pain. For me Coco, where you are now was one of the most painful for me. "Right on the edge of leaving" *gasp* Yeah, I remember that.....
Lynn is close too, and like you it was a huge factor in me being able to place him. It sounds so familiar to what happened with us, I knew I had to place him but was soooo not ready. I was told it could take over a year, yet a spot opened up within a couple of weeks... I was stunned! Yet I do believe everything happens for a reason, and I believe we are given "signs" (if we are only open to them) It is the absolute right thing, and I pray for strength, comfort and a smooth transition for you both ((hugs my friend))
My L.O is in a nursing home that does not have an Ahlzhiemer's unit. He is very peaceable and not aggressive, but he walks the halls and is said to go into people's rooms. But I didn't know about his visiting other rooms until a few days ago. We had a conference today and I discovered that probably the charting has not been done all the time or consistently..But if they don't chart everything In fact they have 2 different charting sources and the right hand does not always know what the left had is doing. So I have not been getting timely reports on his behaviors. When I come in and ask the girl at the desk about his issues she says there's nothing on the chart while she's occupied with someone else. I can appreciate that they are busy, but they said they didn't know that he has migrains, doesn't need Milk of Mag., needs Tylenol P.M. at night., and also needs cereal and milk late at night.
Nikki, could you tell me what kind of a drug Marinol is? I can't research it right now because I just got a message on my computer that something has run out on my Yahoo account. Son, Tim, is coming tomorrow so he can set it back up again for me and I can look it up after he goes.. Thanks to everyone!
Midwestern, where Lynn is there are two floors plus an attached, but separate building for ALF and restorative care. The 2nd floor is mostly Alzheimer’s patients, the 3rd is for others needing more skilled care than the ALF. My point in explaining all that is even the floor that is not for dementia has in place policies to help newer patients transition.
Some will always wander at night and go in others room. Dementia or not, they should be trained in how to help these poor souls, and more, it is their job to redirect and bring comfort to their residents. If they continue to make you feel you need to figure out how to resolve this issue or they may have to have him leave, I think it would be wise to call for a care plan meeting and ask for the DON (director of nursing) to be there. In the grand scheme of things, this is a relatively mild behavior issues and one that they should be able to handle.
About the Marinol, it is manmade synthetic THC. In other words, a pill form of only the THC, not all the other chemicals. found in marijuana. My husband is late stage and he was slowly starving to death. He was down to 91 pounds…………I did my own research and in sheer desperation I asked that he be put on the Marinol for an appetite stimulant to try to save his life. We were given what I consider a miracle, you can read about it here on Joan’s.. just search Our experience with Marinol. ( I will bring it to the top for you)