I read all of your experiences about this all of the time, but, this weekend I had to live the experience for myself. It was the hardest thing I have ever done in my life. My DW still doesn't understand what we (she) is doing and/or why. She has cried pitifully and I have felt so sorry for her that I could cry with her. This, after the h..l we have been going thru at home when I thought I would be glad when this day came and I think she hated me. I don't understnd me.
dean I am sorry you had to make this terrible decision. Sometimes we realize that the disease is more than we can handle. It is a battle that can not be won. None of us early on ever realized the complexity of care needed. My husband had been in a dementia facility for three years and I still find it hard to believe. We thought we were doing everything right. Stay with us.
dean-you bring back memories. When I was a little girl I was aware of old age homes. They were places for old grandparents. Never heard of AD. Never imagined the need to place our spouses.
Dean, most of us are going to have to do what you, bluedaze and others have done. It is very hard to keep them at home until the end, and some caregivers ruin their own health trying to do it. Please try to understand that you have done what is best for HER, and that is being a good caregiver. (((HUGS)))
Bluedaze, Dean, all, you did do everything right. It's just that there is so much that is WRONG about dementia that sometimes we need more help. I am so sorry for your pain, Dean, but now you will be able to gather strength from the respite that placement brings and you will be able to stay the course to care for her til the end. We don't have to have them at home in order to do this. Big hugs to all of you in this situation.
In spite of the feelings I have about my husband, I really don't know how I would have handled John's placement if he were at home when it happened. (he went from the hospital to the nursing facility) But, I don't think he knew what was happening. I went to see him a few days ago and he was speaking. He thinks he's only been there for three weeks. I guess, like my daughter tells me, that it's better than him knowing where he is and that he won't be coming home. Yep, hang in there, dean.
Dean, My thoughts & prayers are with you. I am also facing placement more each day. I tried after his hospital stay...after hitting an aide who was trying to change him after he soiled himself, I decided just do Daycare everyday & bring him home in the evening. But, I can see the time, that option will no longer work. May sound terrible, however, I hope his fight with this disease ends before that time.
Dean, soo sorry you have had to place DW. in our hearts we know its what is right for them at this part of the journey. its never easy to come home to an empty house. in a way its the beginning of the grieving process. so many here have walked these steps as well dean. it will get better, give it time. divvi
Dean, I know exactly how you feel. It's only been a month since I place Jean. I felt just like you. It was the hardest thing I ever had to do. He still knows me and things are o.k. while I'm there. But when I'm leaving, he always wants to go with me. He dozes a lot so usually I'll leave while he's asleep. He doesn't remember that I did that. I keep telling myself that it was for the best for both of us. You need to do the same.
Dean I am sorry you had to place your dear wife but you have to keep reminding yourself she will get all the care she needs. My DH is still highly functional and I sometimes wonder where he/we are in this disease. The neuro said mid stages last month but I just don't know. I hope you will find peace with your decision. God Bless.
Oh Dean, I am so sorry for how difficult this is for you. You are a wonderful, caring man who is doing the right and loving thing for your wife. I am sending you hugs and comforting thoughts and hope that you DW makes the transition with some ease. I dread this time in the future! hugs, Sue
Dean, my hope for you..and ultimately for me and others following here.. is that your DW gets adjusted to her new surroundings and becomes 'friends' with the other residents and staff very very soon.. Last weekend, I went to the facility closest to our home. I want to enroll DH in their day program.. A couple of residents were sitting near the doorway of the room I was going to meet with a nurse about working out a plan for DH's next visit.. I asked them how they liked living there.. and the man nodded affirmatively.. the woman said, " I really like being here, its like having a large family". Coming from the actual residents, those were the most encouraging words I've heard thus far. Thank you so much for sharing these things with us.
Dean... Sorry you have to go through what we all will eventually face... I,m trying to be as pro-active as possible..I have decided that I will place Dee in the fall for 2 main reasons,, first, I want to have the time to make the best decisions possible and second, my sister works for the local school system so she has agreed to help me during the summer months... I have visited about 6 differant homes and have it narrowed down to 2.. I have gotten information from the alzheimers assoc. and have gotten advise from others spouses on this site plus local people in the same situation , plus the nursing home people.. I just purchased a new twin bedroom set as she has been in a queen bed here at home but that would be to large to move into a small room in the fall and I want her to have a recognizable bed when I make that move... Familiarity is a key factor in the move ( learned that from an administrator and it makes sense ) Dee is moving into ( as the nero described ,, moderate into severe stages ) late stages so I do know what is comming.. Also have learned that you need to find out if the choosen location will keep them to the end as some will only keep them in the early/mid stages and thereafter we would need to move them to another facility that takes late stage... I try to do my best at not thinking about what the move in the fall is going to be for me for I know it will be difficult... Again Dean,, my thoughts and prayers are with you
Thanks to all of you nice people and I hope each and every one of you have a Happy Valentines Day.
I don't know if you picked up on my quandry or not. For the last several months, things have just gotten worse and worse at our house. I mean screaming and such to the point that I realized that I couldn't take care of her. I was so miserable that I just knew that I would be glad when I wouldn't have to live like that. In fact, (maybe I ought to be ashamed of myself) I looked forward to this, at least some relief and peace. So, Why is this breaking my heart and why have I come close to backing out? And after what I have been going thru, why would I want to go back? I don't understand why it has to hurt so much!
Dean, my heart goes out to you. It IS the hardest thing you will ever do. I also hated to place my husband but like you I looked forward to some normalcy to my life after he was placed. But that was not to be, not at first. I hurt so badly that I didn't know how I was going to get through each day and as soon as I got home from work I went straight to the nursing home and stayed till bedtime. It hurt every time I walked out the door each night. It has been 7 months and the pain has lessened and he is adjusting, as am I. I still go often, but not every evening. It still hurts when I was away, but not as much. It still isn't easy, but it is better. Try to find some peace in the fact that you did what had to be done.
Dean-I still come home to an empty house. Three years after placing my husband I have lost so much of him that it doesn't matter where he is. He will never be with me. The self doubt does go away.
Dean, there is hope that it will get better on your DW and on you. we placed Carol in an AD facility on Jan 6 and 3 weeks later they recomended that we move her to the Health Care unit. She has been there 2 weeks and things are going so much better than I had expected. She is very content and even peaceful. She probably had a small stroke in Dec. and her head is now always leaning down and to the right. Chin on her chest. but she does seem to be able to eat and look around some. I feel that God has made it so much easier on Carol than so many others I have heard about. May God Bless you and your DW. bill
Dean, placing them is never easy. It is about what the right care for them is at a given time. Based on what you said, you have made a choice to ensure she gets the right care - you have done what you could.
My way of dealing with very, very strong emotions is to get physically active. When I placed him, I cleaned out closets and his dresser. It was good for me to go through all of that. As I was working out "letting go of him" this weekend, I cleaned the cellar and my guest room as well as repotted lots of plants. I don't recommend this exact method for everyone (my aching body is letting me know I did too much) but I do reccomend finding and doing the thing that works for you.
You have now become her advocate. If you thought caregiving was difficult, advocacy has its exciting moments too. You are her voice and you get to ensure she gets the care she needs.
The grief you are currently feeling will ease as you get some time for you and she adapts. Give her plenty of time to adapt and follow their instructions on when to visit. The aids and nurses are your friends for cluing you in on what is going on with her.
Dean, I had to do an emergency placement last August. I understand the feelings. My DH had been so aggressive for a year that I could not handle or calm him. I go two or three times a day, but sometimes that makes it worse.
After reading therrja method of survival, I think I will try that. I have left everything just as it was here at the house. Not sure why. Maybe I can't let go, but what am I holding on to? He will never be able to return. It just keeps me in limbo more. Thanks therrja...I needed that.
Dear Dean, please know that you are doing the right thing for the woman you have loved for so long. Take a deep breath and go forward, stronger and better able to cope with what lies ahead. Arms Around and Around, Susan
I am trying so hard to keep my husband at home a long as possible. After his hospital stay...being so combative & him grabbing me by the neck, I was advised by everyone to place him. Which I tried, however, he would not allow anyone to change him when he was soiled...took swings & hit an aide. I decided to take him each day & bring him home in the evening. This last week he has been so abusive, when I have tried to change him, that I know I am going to need to do something soon. Every time I think they will probably need to restrain him to change him, it makes me sick. I don't want his final days to end in restraints. At 59, he is still very strong, I know he could hurt me. I am so torn as to what to do. I never cry, but this evening I find myself in tears.
kadee sounds like meds need adjusting. if hes aggressive nobody will want him unless they sedate him first so he doesnt harm anyone or himself. before letting the NH do it try to speak with his dr and see if you can get things going while hes at home. if hes taking swings and putting his hands on you -you must do something soon and drastic. or else he will be in restraints. better pharmacology that you can control rather than alternatives. it may make him sleepy at first and non responsive until they kick in. many have had to resort to drastic meds to get them under control including myself. we used zyprexa and he slept almost all day on it but its better than having to place him. soon enough he moved into another stage and the meds were cancelled. good luck divvi
kadee, you have to think of your own safety too. that's utmost. you can't take care of him if your hurt, or worse. Divvi is right, concerning meds, you should speak to the doctor about this and see if it can be done before placing. For your own best interest, and for the safety of you as well as staff who might also need to care for him, even if it's only during the day.
I lthink that it so strange that I feel so close to you all. We wouldn't know each other if we passed on the street, but, I have more in common with you than almost anyone else and I am so Thankful for you each and every one.
Kadee: Please do something before you get hurt. I know how you feel and I thought the same way, but, the time has come. I can relate to your statement that 'I never cry'. I don't either, but, I sometimes wish I could. I think it would help. Is there such a thing as crying on the inside? I don't know.
All the rest of you: I am busy trying to get our house ready to sell so I can move to Tulsa. I had thought that I could take my time because she is being well cared for, but, I don't like that. I have to get close to where she is so I am just going to sell the house for what I can get for it and go. I'm still trying to figure out what my life is going to be like in the future.
I will always remember the day I took my DH to the secured ALF. I left him at his daughters house with her and the grandchildren while I took some personal possessions. The staff came out to help. I froze. I couldn't pick up the bag that contained his personal items and clothing. A staff member picked it up and led the way to the room. I started sobbing at the doorway of his room. The staff was surprised and tried to comfort me but it didn't work. I just sobbed and sobbed. I finally left and got a little better. After he was admitted it took a long time for me to realize that he was safe and was appropriately placed. It's not easy. I think everything in life is a trade off. You trade one problem for another. Our visits are good now. He's not mean to me but he doesn't mind passing it on to the staff that provides care for him. The house is quiet and lonely. Am I a widow? No, just a wife waiting for the next shoe to drop. You do what you have to do. He has never asked or begged to come home, though I do take him out frequently and 3-4 days home visits. But this is getting harder. He is content in his own little world in the ALF. After this type of dementia reaches a certain phase, it's much harder on the caregiver than the patient. They are oblivious of the circumstances. I'm just thankful I can still drive and go to visit him.
Many many Thanks again. Our Daughter and others fixed her room and decorated it nicely. It looked real homely. But, she packs everything in the room (or rather just puts in in a nice pile by the door since she doesn't have any suitcases) and waits for me to come and get her. People are getting tired of putting her room back together, but, what can we do to stop her? Anybody else had this problem?
Dean, it is very sad to see them struggle to go back "home". As Bluedaze says, it does pass - we just have to survive and be patient with them until it does. You can also look at it as a nice compliment to you. She knows she is not home and she knows that she belongs with you. On some level she still recognizes you as her special person and knows that you will take care of her. You have done a very brave thing to admit that you were not the best one to take care of her and placing her.
The practical side of all of this is that she may need a Med adjustment to help her through this phase. When my husband was at his most aggressive, a doctor told me that they sometimes get very aggressive as they go from one stage to the next. In his case, he ended up in an institution for a "med adjustment". They way over medicated him to settle him down. When I found a good place for him after that, they slowly lowered the meds and he ended up being much more placid.
Good luck with this - it is a very tough road that we all walk and it is a good thing that we have each other. Who else would understand what we are going through?
((Dean)) My heart is breaking for you.... I remember all too well having to place Lynn. Today is a year since placement and I am not handling it very well. The one thing that brings me any comfort is that I know I did this for Lynn. I knew he needed more care than one person can possibly provide. I love him enough to want him to get the best care. I love him enough to admit, that as much as I wanted it to be, I just wasn‘t able to do it alone.
I am one of those who kept him home way longer than I should have. I suffered multiple TIA's and my health was at great risk. He was both verbally and physically abusive, he refused personal care and every single day was a gruesome battle. Yet, still I felt I had to keep him at home. I felt I had to be super woman, like I had to be like the only AD role model I knew, Nancy Reagan. The HUGE difference was that I was doing this all alone, it just can't be done. It is just too much for one's soul to bear.
I wont lie Dean, it was the hardest thing I have ever done. The first few weeks were the hardest. I can't recall how many times it took every single thing I have not to pick him up and RUN for the closest exit. It is so heart wrenching. The pleas to go home, the sadness is overwhelming. But, I will say... He DID adjust, just as they assured me he would. Now he is content, finally he is peaceful. And I will go so far to say he is happy.. as happy as someone in late stage AD can be.
The greatest gift I was given, came from the heartache in placing Lynn. At home I was nurse, doctor, mother, "the enforcer" I know this is what made him lash out at me. But the second he was placed, a part of "My Lynn" came back to me. A part, I though I would never see again. *crying . …..He loved me again. He wanted to hold hands, to be held... he told me he loved me. I was now able to be just his spouse. I think he needed that, I know I did!
So, I guess what I am saying is yes it is going to be very difficult!!!! But, it can also be a blessing. I wanted nothing more than to keep him at home with me until God called him Home. But, it just wasn't meant to be, and once I faced that, our lives got better. Not what I had dreamed and wished for, but still, better.
Try to be kind to yourself. They have staff around them 24/7 to help them with their transition, but in truth, our transition is harder. They will forget, we wont. Just keep reminding yourself... you love her enough to want what is best for her. And yes Dean, there will be a measure of relief. Not like you imagined before you placed her. But, there is relief that they are safe. That you have done your level best. Now you can love her, and care for her as her husband. Your transition time is going to be difficult, those who have gone before you understand just how difficult this is, We are here for you. My email is in my profile, feel free to use it. ((Big hugs of understanding)) Nikki
((Kandee)) Lynn too was extremely difficult. Those first few weeks were straight from hell. For a couple months I had to do all his personal care. He flat out refused everything!!. His medication was increased dramatically!!! I changed him, and even showered him for the staff. Slowly, he allowed them to do small things until one day, he allowed them to do total care. That was around 3-4 months. If you keep your DH home, or try to place him again, IMHO, he should have his meds adjusted. The aggression just will not get better on its own hun. *sigh. My heart goes out to you ((Kandee)) ♥
Thanks to everyone who replied to my post. I called the Neuro today, he is increasing his Seoquel from 12 1/2 mg every 6 hours as needed to 25 mg. twice a day & every 6 hours if needed. He woke up in a great mood....was wet, however, let me change him with no problem, I actually couldn't believe this. However, I knew it was too good to be true, he was very combative this evening when I tried to change him after Daycare. Called me a bitch & squeezed my wrist. He is no problem any other time. Hopefully, the medication change will help.
All of you that have experienced abuse, have tried their best to keep a spouse at home, here is one that truly understands. I thought I was John's hero and rescuer, healer. It didn't happen that way. I've just had to get a grip and accept reality. It IS hard. God help us all and our families.
It has been since last fall that I last posted. At that time I was set to put my DW in a home. Since my job was eliminated I decided I couldn’t afford to have her in a home so have tried to just stay home and take care of her as the ship has been sinking fast. She has continued to get meaner and less cooperative. Over the last month she has almost stopped eating and become very frail. Last week she started falling and 2 days ago took a terrible fall landing on her forehead on the tile floor. She has the worst black eye I’ve ever seen now. After icing her wound after the fall I called the home and asked if they had a room available. They said their respite room was opening up the next day and they were willing to put her in there until a permanent room opens up. So, yesterday afternoon I moved her into the home. I stopped in about 4 hours later to see how she was doing and she didn’t have a clue who I was. I’m pretty sure she is in a better place now for her. ……….. and last night I finally got some sleep. She turns 54 in 1 month. This has been an awful journey. Thanks for listening. Thenneck
My, your wife is so young. I put my DH is a nursing hone in mid-January but he is 86. I'm 76. But it was still the hardest thing I ever had to do. He still knows me and I visit every other day.It's better for both of us.
Oh how sad for both you and your wife...that your lives and times when you should be looking forward to times to share are taken from you this way. And while my DH is lots older than your wife, and nearly 20 years older than I, our years of travel and so on now the kids are secure and with families of their own, are trashed. So I do know how you feel though my DH is doing ok so far.. I find myself worrying a lot about the very thing you faced now. I think you did the right thing for her..She will be looked after 24/7 which is something we cannot do ourselves no matter how hard we try. Getting in home help is not always an answer either for many reasons. Nothing about this disease is easy and everyone involved is punished.
Thenneck, I know how you are feeling. I brought my husband from the hospital to ALF today. My husband is older than your wife, however, he is only 59. It is a very hard decision.
Charlie has never indicated that he want to come home. I am not even sure he knows what "home" is. However, there is one gentleman in the facility with him who goes through phases of wanting to go home. He does not have a suitcase either. He packs his things in a pillow case and stands by the door waiting for his ride. After a while, he realizes they aren't coming and unpacks only to do it all over again the next day. This goes on for a few days then he is ok for while.