I have been following your journey and thinking of you and Sid. This step has to be harder and sadder than I can imagine . My heart goes out to you as I imagine your pain. I often look at my DH and wonder in disbelief how my Handsome, strong, caring, capable and loving man has lost so much of who he was. I understand what you mean when you look at Sid. There are no words to say except we understand and care.
So glad to have word from you Joan ((hugs)) I am hoping the fiblet worked well! Yes Joan, we understand. When I looked back it was "My Lynn" I saw too...... he was distraught and that made it all the harder to leave. They had two LNA's in with him so I could leave, yeah it ate me alive leaving him there. It took everything I had not to sob in front of him, and to not scoop him up and run for the closest exit. Never has anything been that difficult and heartbreaking. I tried so hard to wait till I got to my car to cry, but I didn't even make it to the elevator, I collapsed and let out gut-wrenching sobs right there in the hall. I didn't care who saw at that point, as long as it wasn't Lynn.....
And now, my overwhelming emotion is gratitude. I leave with joy and love bubbling over in my heart. It is still "My Lynn" that I see to this day... but he is so happy in his little world. He gets such excellent care, stimulation and therapy there. His peace and comfort brings the same to me. It does get better Joan, I promise ♥ ((more hugs))
Dearest Joan-I have been where you are but cannot presume to know how you feel. We are all different people bringing our memories with us. It is almost heart stopping to leave the person with whom you have spent most of your life. You can visit-but from now on you will come home to an empty house. The acute pain will ease but the loss will always be with you. I think by now you realize how much this wonderful site means to us and now it is our turn to give back to you. We are here for you. Tonight and always.
Joan, I don't know if any words will help but......this thought is always with me. Nikki's words brought it to the front of my mind. When Gord was in rehab, the psychiatrist insisted that Gord should not return home. He said that I would not be abandoning him. He said that I could return to being a wife instead of a caregiver. Being an incredibly stubborn person, I told him that Gord would be coming home. Those last 6 months of his life were so difficult and I am ashamed to say that I thought a lot more at times about how difficult my life was rather than thinking how difficult Gord's life was. I wish with all my heart that I had listened to the man I called an idiot at the time. For what it is worth, I think you are doing the noble thing. You are doing the best for Sid and isn't that what all of us really want and wanted to do for our loved ones. Sadly, what is best is incredibly painful and probably tears the very soul out of you.
One day at a time, Joan ... one day at a time. And there is nothing wrong with tears. But as we have all been saying, you are doing what is best for Sid and that says it all. Hopefully, in time, you'll have fewer tears. But just give yourself time, Joan. As you readily acknowledge, all of us on this site are pulling for you to get through this latest major change in your life as best you can. You, Joan, are our Fearless Leader and we need you to be well every bit as much as you need Sid to be in a place where he can receive the care that he needs. Hang in there, my friend ... just take it one day at a time.
Prayers for good pain mgt for Sid and mental/emotional peace for you as well as good pain management. We each go through this in our own way and gradually adjust to our new lives. You will, too, and know that you have a deep and wide support group because you founded a place for us to support one another.
Joan--I am hoping that things will work out in such a way that the NH will be a better, pain-free environment for Sid. When I placed Steve, I had no idea how he would adjust, how long it would take, etc. To my surprise, I quickly came to realize that the ALF setup was better for him than our home; and of course, I could now focus on taking care of myself. Your own quality of life can improve significantly now (that may sound weird considering the emotions you're having) but it's true.
Joan - You and Sid are in my prayers. My journey was made easier by reading here and learning from others. My thanks to you for being here. Now maybe others who have been in your "shoes" can help you. Just know that your love for Sid has given you strength so far and it will carry you through the next phase of the journey.
So so so very tired today. I forced myself to get up and eat something, but now I am back in bed. I do have to go to the NH today - he is anxious and asking for me. I was going to go around lunch time, but that's in 1/2 an hour and I don't have the strength right now.
After you placed your spouses, did you feel this devoid of strength? One of my friends (who has been through this) tells me I not only have no energy; I am running in the negative. She says it may take weeks for me to get my strength back.
I don't remember feeling so tired, but I'll always remember his face when I left. The thing is, the memory will take its proper place in your life, it won't dominate your thoughts so much as other things come along. Nature takes care of us, just let that be for now. Blessings. Betty
Joan, I know the look and the heart wrenching sadness and despair and I only left my hb in a NH for rehab for his broken knee. I felt like I was leaving my helpless toddler all alone to fend for himself. I do believe it will become easier but I'm sure it will take some time.
No doubt you're physically and emotionally exhausted after all you've been through as Sid's health has declined, so it doesn't surprise me you've no strength at this point. Add to that the very difficult emotional day you had yesterday - I think your body just wants to shut down and heal. We all are pulling for you and pray that your heath will improve and Sid will also be better. You've done so much for each of us and we're here for you. Without you and this website I would NEVER had made it this far on the journey.
Joan, I think if you put all those that have placed or when their spouse dies after years of exhausting caretaking you will find that being so exhausted that you just want to collapse into bed forever is more the norm than not. You are exhausted - physically and emotionally. Does it surprise you that you have crashed now that Sid has been placed?
Being kind to yourself and try to balance between being there for Sid and being there for you. The point in placing him was because you were so exhausted and he demanded so much care, you were going down with him.
Joan, you are probably feeling feelings that you have been holding back. You have been so busy and worn by the day to day stuff that you probably haven't been able to think of various things. I placed L a week ago and haven't been through nearly as much as you have. First few days I could feel some pressure falling off of me, and then I suddenly felt empty one day. You probably need a few days of nothing but sleep. Having a son at home and work responsibilities makes some aspects of this change easier for me.
You need to be kind to yourself and not push yourself to do things, and to allow for grieving. I am sure you will still be busy with Sid.
Grief comes in so many forms. I have experienced death, but missed placement.
You are likely wondering if perhaps somehow you could have avoided placement. . . . ? I cry daily wondering if somehow I could have avoided my little tragedy. . . .
In searching for old photos of my family I came across a picture of Rita. It is likely the worst picture of her ever, I dont know why it was taken. Likely it was an accidental snap of the shutter. Her face is distorted in the baffled, bewildered, crying state that only another AD spouse would recognize. She is obviously in severe COGNITIVE pain. At the moment of that picture she had no idea who I was or even who she was.
I have placed a copy of that picture on my dresser such that I can look at it daily. Strangely it has brought me peace to see it. This is because it reminds me of how bad she REALLY was. How severe her symptoms actually were.
When I see it I cry because I miss her terribly, but I am also reassured that her being 'separated from me' is a good thing, not only FOR ME but for her too. . . . It helps me orient myself to my new role.
Cry all you want Joan, reorienting yourself to your new role is not easy.
I am checking in for my daily dose of support, and you do not disappoint. What a wonderful group of friends you are.
When I woke up this morning, I could not move. My body was so sapped of strength, I could not get out of bed. I went back to sleep, and woke up again at 1 o'clock in the afternoon. I dragged myself to the NH to see my confused husband in tears because he was so worried about why I hadn't come sooner. He cried that he wants to go home; that no one is doing anything for him; that they are all terrible. The nurse assured me that it's normal for them to be angry and ask to go home until they adjust, but it tore my heart to shreds.
Within the next few days, I will be meeting with the doctor, therapists, and administrators, to go over a care plan and make sure that all of my concerns are addressed. But right now, I am trying to get as much rest as I can. I can concentrate on nothing except getting Sid the care he needs and getting some of my energy back.
And yes, I have been sobbing my heart out. I am sick with grief, but the constant phone calls from friends checking up on me, and your words of support are helping me get through these first horrible days.
Oh dear Joan -- it is a sad and unfair truth that doing the right thing can feel just terrible. And it's a huge right thing you're doing for Sid and for yourself. There's not much to do about the emotions but to let them play out.
But keep reminding yourself that of all your limited options you have chosen the best one by far. Old Sid would have trusted your decision and stood with you unquestioningly. Honor your brave choice as you search for peace and comfort and know that you are not alone. We will stand with you now.
Joan I know , you know, all the reasons you had to make this decision, and of course, you HAD TO. However, that does not take the pain away, your pain. And like anyone, well or sick, leaving home is very hard, and in time it will feel familiar. Dado yelled at me every time I left, for those first few weeks. He could not say any words, but he yelled and almost threw fits. Now, sometimes when I take him out for a ride, it seems like he is looking forward to going back there. (they are very kind and love him)
please, even if you feel too depressed, drink lots of water, eat well, and I found that taking a b vitamin every day really helps my sadness, not sure why, but it does.
M-man made a very poignant comment, how he has that picture of his wife that is a terrible one, but that he keeps it to remind him of how ill she was, and that perhaps this helps ease the pain of loss. I too, have a photo of Dado, taken about a year ago. It is the first photo where I could see his sickness, he is sitting on the bed holding a giant gourd I had grown. He looks so sad, and lost, and vulnerable, yet for some reason, I love that photo.
I am so sorry, Joan - how very difficult this all must be. If we could do what we wanted, we would wave a magic wand and make all the pain and suffering disappear and restore our loved ones. But doing what we want is not an option, so we do what we must. You are a strong person - I've no doubt you will get through this difficult transition and be a powerful advocate for Sid's care. I will be lifting you and Sid up in prayer.
The old timers here that have gone through this before you say just give it time. So all I can say is give it time.
I know when I took hubby in to respite for the first time when I went to leave and he was sitting in the dining room at a table with 2 ladies that you could tell they were very far along with dementia. He looked up at me with the look in his eyes like deer in your headlights. Took everything I owned to keep walking even though I knew in a few days I was coming back to get him but after a couple of days when I got my feet under me I did OK and really enjoyed my time away. I hope after a few days you will start to feel the same way.
Also a suggestion maybe get some 'boost or ensure' to drink if you're not up to eating at least you will get your vitamins and have something in you stomach.
As one of the old timers who went through placement, let me say one thing that I don't think has been said yet. You are, and will be grieving. With grief the most important thing you can to is admit the feelings you have. The good ones. The bad ones. The surprising ones, like relief. In many ways anyone who places their spouse with a terminal disease is like a widow. You will have the experience of sitting on the couch in the empty house and asking yourself, "Now what?" Make sure you come back here when it happens and tell us about it. Because us old timers have figured out the answer.
Also, please remember that you are doing what you have to do. It is important that you survive. If you don't, who will be Sid's advocate? Who will make sure that he is properly taken care of? It is OK that you are placing him, in part, because you no longer can manage to take care of him alone. Where did we all get the idea that we are supposed to take care of our spouses alone when the job becomes more than we are physically capable of? I still remember an aide who I didn't know who I met in the last week of Joe's life. She had taken care of him during shifts when I wasn't present from the beginning. She was there in the parking lot when he almost got away from the nursing home during the first week. And she was shocked that I had been caring for him alone back then.
It might be a good time to re-read "A Curious Kind Of Widow", written by Ann Davidson, one of the earliest AD books I read. The author blazed the trail for me and many other AD spouses in her down to earth story about her brilliant husband's decline into the Alzheimer jungle. Joan used to have this book posted on her Home Page. I'm sure it's still in Print. I loved the title, because it perfectly described the lives of men and women who have placed their husbands. They are still alive, but the spouse is having to live their lives as a widow or widower.... long before they really are.
Thank you for coming back to contribute to this thread. And yes, I can't tell you how many doctors, nurses, and other health professionals to whom I have brought Sid, have said to me in horrified disbelief - "You're taking care of him by yourself??????"
Nancy- yes, I have that book, and may begin reading it when my concentration returns.
When I called the NH this morning, I was sick to hear that he wouldn't come out of his room. But when I got there at 1 o'clock, he was sitting in the dining room finishing up lunch and talking with the only other male resident in the Alzheimer's unit. He had been shaved, so he looked better.
Because they won't let him out of his wheelchair without their help, his pain is already better. He was happy to see me - didn't remember that I had been there yesterday. I chatted on about friends and family, and he seemed to enjoy listening.The head of PT came in, showed him a few moves to do with his legs to make his knee pain better, and it worked. Sid was thrilled to hear that he would be starting PT after breakfast tomorrow. Of course, he will remember none of it, but it warmed my heart to see him happy in the moment. He was very tired, and did not put up a fuss when I called the CNA in to put him in bed for a nap.
It was so sad to see him in that small bed all by himself. I wanted to curl up with him with my arms around him. Instead, I kissed him goodbye and told him I would see him tomorrow.
I can't bear living without him, but I do know that he is getting care I just cannot give him. By the time I got home, my back was killing me. I was able to take a pain pill, Iie down, and know I don't have to get up to tend to his needs.
Thinking of you Joan. It was like that for me early but as my wife became more accustomed and really was receiving round the clock care I couldn't provide - it gradually settled down to specific things I would have had to face alone before and now had a team of people some of whom were quite good.
Get through the hours and then get through the days and don't look around too much right now. Any spare energy I would focus on rest, sleep, quiet, and keeping in mind that if I'm ever really under siege - it's now so stay sharp.
Joan, thanks for sharing your deep feelings about this. It will help some of us who still have this time to go through. Also, thanks to all of you who have already done this for your suggestions on how to get through it. Nice to see you back Starling.
Joan, you have given and given and given until you are 'given out'. Now take and take and take - whatever you can - from us here, from anyone you know, until you are rested and ready to face this world again. We're all here for you.
Good to hear Sid is getting some relief from the PT and that he will mingle with the other residents. It won't help much on the loneliness you are feeling but when you worry about Sid remember back to walking in seeing "he was sitting in the dining room finishing up lunch and talking with the only other male resident in the Alzheimer's unit. He had been shaved, so he looked better. " That is evidence that this is better for him. Also, remember the pain you were in when you arrived back home - this was the right move for the both of you.
I am believing as each day goes by it will be a little less painful for you. You need to get your rest physically, mentally and emotionally - you are beyond exhaustion - cause you still have a big job ahead which is being there to advocate for him when needed.
Dazed - You took the words right out of my mouth! Joan, as heart-wrenching as this is for you, you are making a difference in the lives of so many of us who still have to walk that path. My hope for you is strength & comfort as you try to take it one day at a time.
Joan, I'll be in a position to feel your grief tomorrow when I place my wife in a memory unit. This will be the first time we've been separated (except for a few business trips) in almost 60 years of marriage. The only advantage I will have is that I will be moving into an apartment in the same building with her, just upstairs.
You need to take care of yourself so you can continue to take care of Sid. I read the analogy to what is said to those With children on a plane. Put your oxygen mask on first, so you can help your child.
The best thing I found after placement, and I hope you do too is after he gets adjusted... after you had cried and slept for days because you ARE so exhausted... because you have not had a chance to slow down and really KNOW how exhausted you are until now... I hope you find that you will begin to enjoy being with him again. You will not be as stressed out. You will be sleeping better at night. You will not be hurting yourself trying to lift him. You will be able to go visit and enjoy (for what it is) each others company. And you will feel somewhat of a peace and calm beginning to return.
Again, I'm sitting here debating whether I have anything useful to say to you. Of course I've been following your journey, like everyone else here and feel the emotional trauma you are experiencing.
When I had to place my Dear Helen, It was not so bad for me because she was farther along than your Sid, and didn't seem to realize that anything had changed. My problem was my own feelings of loneliness.......Being without her after 67 wonderful years.
I want to tell you what helped me the most, and I got the idea from your website, in fact you wrote a fairly recent blog about it named "Going Away". I was spending too much time with nothing on my mind except the depression and sadness of my situation. Naturally, I had to visit Dear Helen, and I seemed to be drawn to this website, But I made up my mind to find something else that was completely different that would consume me and take my mind off this bad stuff.
I decided I was going to try to understand Einstein's theory of relativity. A subject which I had long been curious about and the computer was just the right tool for helping me do that. I got so interested in that subject and so absorbed in it that I would forget to eat and sometimes stay at the computer till the wee hours of the night, learning and following where it led me. And even when I was not at the computer, my mind would often be on the science stuff rather than Dear Helen and my loneliness. When visiting her I would tell her all about Einstein's work. And she would listen, believe it or not.
Joan, I think you are so absorbed in this website, and the caring for everyone here, that you are stuck in a really bad situation. You are always apologizing for not posting often or for not greeting newcomers to your site. Please, just take it easy for your own wellbeing and for ours. If something bad happens to you, Sid and all of us will suffer.
Get back to your computer games, Joan..... With a little effort, I'll bet you will be able to compete with the experts. You have to find something to do and think about that is fun and interesting and far away from all this misery. I know you need to spend some time with Sid and the website or you will feel guilty, but as for the website, I'm sure you realize that your wonderful group of old timers will keep it hopping.
.........Sorry that this is so long, Joan, but I felt like I wanted to say something.......... George
Hi Joan. I totally agree with George. It is important to focus on other things besides wallowing in our pain. I am placing my husband in a week. Yes it will be lonely and I am prepared for that. But the way I look at it we have a choice to wallow in the mud or not. I am choosing to not. One thing that has helped me are my knitting groups. I know you enjoy knitting. I have found a weekly knitting group that is great. We just knit and talk but nothing about Alzheimer's. for that hour and a half I feel normal and get some good socializing. I have no doubt that once you rest and get some of your strength back you will have the energy to start thinking about yourself. Blessings.
Still keeping you in my thoughts Joan ((hugs)) When you still love your spouse as much as you love your Sid, it is suppose to hurt deeply....... There is nothing wrong with spending as much time as you need grieving this monumental loss and these life altering changes. Do what feels right for YOU!!! Much love ♥
adjusting to the huge changes of living alone is life altering. having to place our spouses has to be on the list of monumental mentally challenging tasks. its out of love and concern that they need the continuance in care that we are unable to provide due to personal or physical issues. tears are the way to cleansing the mind and soul and help to give way for better thoughts to take their place. it will get better as many attest after a while. divvi
I agree with you, George. Too much negative thinking, and we stay in the hole. A little goes a long way, but not a big help to putting us on the positive track of life's journey. This is not to minimalize our grief, loneliness and 2nd guessing (I did that when thinking about how we reared our kids and how I cared for hsb.). I started substitute teaching in a special needs class, volunteering and temping at my last when needed. If I could quilt or knit (more than a square), I might have participated with one of those groups.
Joan, and others in various stages of caregiving and grief, my prayers and good wishes are with you.
Another take on George's post here. I quilt. My bedroom is quite different now from what it looked like when Joe lived here. I needed a new bed because the old one was in such bad shape. I bought a double adjustable bed instead of the king sized one we had together. There are quilts on my walls. You would never have known that I'd been doing this stuff for decades before. And in what had been empty space, because I never set up the reading nook I planed on, there is a sewing studio.
Once you get your sleep deprivation dealt with, and you attend to your own medical and dental needs (took me almost a year to do that), it is time to look around, find other people to interact with (I went looking for widows, but ended up making friends with the female half of several other couples as well), and figure out what really interests you. In short, your job will be to rebuild your life.
I also started dealing with the grief. I started talking to a bereavement counselor from hospice a good 18 months before Joe died. I worked my way though books about grief both before and after he died. But I'm a book person, and I know everyone isn't. But the bereavement counselor is something that every person in this situation should do.
When I read your posts my heart breaks for you. In the coming months it will get easier, but getting though these first weeks is hell. I am praying for you and Sid.
I understand what you are saying about being positive, but it's a process. I have a lot of grief to get through, as well as rest and recuperation, before I start thinking about rebuilding my life in a positive manner. I will; I know I will, but right now, I am raw, hurting, and confused. Those feelings need to be dealt with before I can move on.
Starling,
I definitely think a bereavement counselor is a good idea. Since Sid is not on Hospice, I doubt I could get services from them, but I will talk to my social worker - she must know where I can find such a service.
Today was not a good day - Sid kept crying that he missed me and wanted to go home. He had PT this morning, and by the time I got there at 1 o'clock, he absolutely insisted he did not have it. He had no memory of it AT ALL. Nor did he remember anything the head PT showed him the day before when I was there with both of them. I think I am going to skip a couple of days of going to see him. I'm hoping it will help him settle into their routine a little better. I have a care meeting on Thursday morning, so I will definitely see him then.
Well, I'm going out to supper with a friend. Her husband died of Alzheimer's a few weeks ago, so we lean on each other for support.
Placing a loved one is a lot like a death. The caregiver needs time to grieve in her/his own time. Rebuilding one's life takes a tremendous amount of energy. Joan give yourself time to finally be bored and then you will find things to fill the void.
bluedaze, you said that beautifully. Yes Joan, you said what I was thinking but in a nicer way :) I think we all agree a positive attitude is exceeding helpful, but good Lord! It's only been a few days........
Yes Nora, I went into full-blown mourning. I am still very much in love with my husband and I realize that made the whole process more difficult than it would be for those who let go of the love. I did what was right for me..... Joan you do what feels right for YOU! There is no right or wrong here.... just support for you as you work your way through this gut-wrenching time.
I am sorry today was such a heartbreaker and I pray Sid will find contentment so you can find a measure of peace. Much love and lots and lots of ((hugs))