Joan, my thoughts are with you. Prayers for strength to go on. Marsh, I wish strength for you as well. I don't know how you get through this.
m-mman*, I too, have a picture like that. One of the times that I had to call 911 for Gord, I decided to snap a picture of him within minutes of his return. I thought it would be good to have several copies to give the police the next time he got away. After he died, I shredded all of them. Apparently, I forgot to remove it from the computer. I walked into the bedroom a few days ago and there was this picture on the monitor. The wild look in his eyes, the terror, the total lack of knowing what was going on. I plan to hunt for it in my pictures and get rid of it. It is way too painful.
Jan-I don't want to hijack Joan's thread but I want you to see this. The last picture taken of Bill was at Christmas. The facility had put a santa hat on him for the picture and you could tell by the look on his face that he didn't have a clue what was going on. After he died I kept the photo in the room I spent most of my time in. Finally my children asked me to please put it elsewhere as that was not the way they wanted to remember him. His picture is now on what was his dresser in our/my bedroom. It hurts to see it but I can't put it away.
Joan, I am so sorry for your pain and your struggles. I am ministered to through music. This may not be your "thing", but as I have read about your past few heart wrenching weeks this song comes to mind...it is kinda my theme song presently. Google "Worn" by Tenth Avenue North and watch the version with lyrics on YouTube. There are days when I am "worn" before the day even begins. I hope it ministers to you too as any words that I can say just don't seem adequate. The song describes where we all find ourselves eventually as we travel this lonesome and isolating journey. Prayers for you and your dear Sid as you both adjust.
Joan, I have been thinking that when you leave a person with alzheimer's (or other dementias) in a care giving facility that it is a lot like taking a small child to the sitter. They usually cry and scream and don't want to stay but usually get over it and start to enjoy it. They may do this each time they are left until they get a bit older and can understand why they are there and maybe even get to look forward to it. They are progressing of course and the AD person is not, only going the other way toward infancy?? (can't think of a better worrd). The spouse has to keep themselves braced for the feelings that they will experience and just know that it is best for both. You have been such a shining light for all of us on this journey. You have given such sound advice and I know it's hard but try to read some of your own thoughts from earlier to us and maybe that will help you too. This is the pits, not the kind in peaches but the hole in the ground that one must find a way to crawl out of and come out of it intact but changed. I hope that you are doing ok. It took about a month but my back stopped hurting and I didn't even realize it until one day I did something that got it hurting again. It does improve. We will survive a while without your tremendous help. (((HUGS))).
Bad day. Worst yet. I got a call from the nurse this morning telling me he was angry, distraught, and uncooperative. He refused to do anything until he talked to me. He got on the phone and went on a rant . He said I had to get him out of there. It was a Hell hole; no one was doing anything for him; he was going to commit suicide if I didn't come get him. I had already thrown up once this morning from stress. That call sent me back to the bathroom. I got dressed and races over there. I found him in the hallway with the PT finishing up his wheelchair walking exercises. He saw me and said that he was going home with me and that's all there was to it. He hated it and wasn't going to stay. Then the Alzheimer's activity director came by, and he told me that she is very nice.
I rubbed his arm and shoulders and told him I as going to a meeting. I met with the head nurse. Apparently she had Googled me and read the website and some of my blogs, because she seemed to know everything about me. She said that as hard as it is, I have to take off my wife hat and put on my professional hat (she knew all about my days as a therapist). She said that during the adjustment period, they all say it is a Hell hole or a prison. The added problem with it being Alzheimer's, is that they don't remember anything they did or anything the staff did for them. She said that I have done all I can do, and it is no longer possible for me to physically care for him. I have to listen to what the staff says about what is being done for him, and follow up by checking the reports. She kept telling me that he is in good hands, that his reaction is normal, and I have to let them take care of him, and I have to take care of me. joang
Since he always has been, and still is very concerned about me, we agreed that when he cries about coming home, we need to say that the doctor says I need rest, shots, and PT to heal my back. That I need the NH to take care of him while the doctors take care of my back. We did tell him that, and for now, he accepted it.
I was so drained when I came home, that I went to bed, which is where I am now. I am physically and emotionally wiped out.
Strength Joan, strength. I know this is hard but the head nurse has a lot of experience with this disease (otherwise you wouldn't have placed him there) and knows what she's saying and doing. It's been my experience when they can, the spouse behaves like a spoiled child looking for Mom to kiss their "boo boo's" and manipulate us because we love them so much. Just like you did when childrearing, resist! Yes it's hard and truly breaks your heart but it's necessary for BOTH of you.
One tip that has worked for me because I try to keep complete files on DH, when he was in rehab for recuperation from knee surgery, I asked the nurse for copies of the previous days logs - meds, behavior, dr reports, etc. That way they only have to make copies of 1-3 pages, didn't charge me for them and I had a current file that I could refer to. It's easier than requesting a copy of the files 1 or months later. His file belongs to you too and it helps with monitoring what's going on with his care. It also had info in it that wasn't discussed with me which I found helpful.
You and Sid will get through this transition, although I know it is heartbreaking for you both right now. (((HUGS)))
This is heartbreaking. You have been and are a wonderful caretaker to Sid. I wish that I had a good word of advice to give you, but I don't. Each member here is dealing with a spouse who has dementia however, each and everyone has different types of dementia, different stages, and different issues as we travel this wilderness journey. One size does not fit all...as does not one answer.
I can add however, that I would think it's somewhat similar to when we would drop our little ones off at nursery school. They would scream, kick, yell, and cry. Oh, such guilt we had! However, as soon as we disappeared within hearing or seeing range they would happily be playing and forgetting all about Mama. We would torment ourselves on our commute to work with that mental picture of their misery.
Sid may realize that you are not there, but having dementia he has no way to measure the passage of time. He may have the ability to read the clock, but he may not make sense of the information. So if you are gone 8 hours or 30 hours can he really know? I think that I would give myself a break of time and perhaps he could adjust quicker? Don't know? I do know that he will evidently adjust and when he does you will have that peace of mind. You made this decision and struggled with it for sometime. You tormented over it and it was not easy, but Joan you did and are doing the right thing.
With God's speed may each and everyday go just a little easier.
Wisdom from the nurse. I also agree that approaching it by what you need may calm him more than saying you can't take care of him any longer. You know Sid and you know what may reach him the best, so go with it.
I just had this same conversation with hubby's geriatric psychiatrist last week. He was mad when I dropped off at respite and mad when I picked him up and also he made one phone call to me and he was mad again. She used the same example as Lullie about dropping kids off and picking them up at school. Once I got him home he was still upset but I changed the subject and by the next day he didn't even remember being in respite for 10 days. I also didn't see him for the whole 10 days.
This is such a tough time for you....but it is time for you to put yourself first.
Joan, the nurse sounds like someone you can depend on to give you good advice. Lean on her wisdom. It is very easy to believe our loved ones and doubt our decision, but you know that this is the right place for him. One day at a time and stay in bed as long as you want to.
One piece of advice from my son, which has been very helpful to me: when you are in a dark mood, go outside. Even if it is to sit in the sun or water the flowers for a few minutes, being outside lifts our spirits immediately. It has always worked for me. I hope it may bring you some comfort. (((hugs)))
Fiona68, I absolutely agree with your son! I'm sitting outside on the deck right now. I try to walk every day and that helps too. If the caregiver is here, I can go farther, otherwise I walk around the circle in front of our house after my dh has had his pills, breakfast, and is having his first nap of the day. I'm dreading winter. We live in the northeast.
How heartbreaking Joan... I hope today was a smidge better. You are taking me back to the most painful time in my life....... so much of your pain is familiar to me.
As you know I have had to have a series of brain surgeries since 1999, tons of doctor visits and hospital stays. The ONLY way Lynn would stay is because I told him we were there for me. I lied and told him I needed more testing and I asked him to please stay with me. He agreed to stay for ONE night! So so difficult.
I told him I would be right upstairs if he needed me and that seemed to calm him. When he was home I was sleeping on the couch because he told me his mother did not allow girls in his bedroom *sigh* So, when he asked if he could come upstairs with me I just told him my mother wouldn't let boys in my room and that seemed reasonable to his mind. The staff was just wonderful about keeping these fiblet for us. Every time he asked for me they would tell him I was right upstairs and would be down in a few minutes. We did this for the first few months until he transitioned and just forgot he wasn't home.
It is so difficult Joan and it hurts so bad it does physically hurt. I am so sorry you are hurting so deeply. He will transition Joan, it will get better......... Much love ((hugs))
Ladygolfer6970, We live in Minneapolis and I believe our winters compare with yours (approx. 6 months). Last winter I could take my DH bowling, which he loved and it took a big chunk out of our day. Will your DH do something like that?
Joan, So sorry. Hopefully Sid will get used to his new living arrangements. When I placed my DH I was told it could take up to 3 months before they settle in... the reality is it is Alzeheimers and the majority settle in, but some take a shorter time, some take a longer time and some never adjust. Take one day at a time. There are a lot of wonderful people working his home who have good insight and advice. I wont tell you how many times I ended up in tears in the administrators office, the nurses office, the hallway, my car, the doctor's office, even my DH's bedroom. Two pieces of advice from my family doctor that stuck in my brain.
1. There are no good choices. No matter what you pick it can be awful, however the other choice is also awful.
2. What you are looking for, a perfect place for a DH to live, DOES NOT EXIST!
and my thought. Placement is the pits. Taking care of DH at home is the pits.
Your comments are helping me so much. Between you and the nightly phone calls I am getting from all of my friends, I am muddling ( is that a word?) my way through this nightmare. Sid has been very uncooperative with the staff, complains constantly about them not helping him, and cries when he sees me. He carries on to me that he can't stay there another minute, that it's horrible, that he's going to have a nervous breakdown.
I have been very vigilant with staff meetings and am in constant contact with them. I can see for myself how much he is making up. Yesterday, I saw the PT wheeling him back from PT, and he told me that he's never had PT, that nothing is ever done for him.
I met with the doctor yesterday, and we agreed on increasing the Risperdal dosage, and giving it twice a day instead of once a day. When I called to check on him today, the nurse said he was uncooperative about getting up in the morning, but finally agreed to a shower and shave. After that, she said he was calmer, happier, and was socializing and participating in an activity. I attribute that to the Risperdal increase.
As for me, I was so physically and emotionally exhausted today, that after I went for a manicure, I came home and slept on and off all day. joang
joan, I continue to keep you and Sid in my thoughts and prayers. Take care of yourself whenever and however you can. Hopefully the increased dosage of Risperdal will continue to provide positive results for Sid, and he will calm down.
glad you are getting some rest - but you are so far behind the eight ball it is going to take a while to start feeling any where near rested. If need be, take a day off from visiting Sid. It will be hard but you know that it is not as bad as he says.
Joan, as others have said, "there isn't a right way to handle this nightmare." You, unfortunately, have to be the one to make whatever decision you think is the best one at this point in time. I really do not see how you could have done anything differently. I know this is breaking you to pieces, but hopefully things will improve over the next few weeks. Try to take a deep breath and hang in there. I will keep you and Sid in my prayers.
Joan, Your site helped me through so many difficult days and nights. I wish that I could somehow be of help to you. Count me among the scores of friends sending wishes of strength and courage your way. You are in my thoughts.
Oh Joan I am SO glad to have found this message board this morning. I have been checking the site at least twice a day after the brief blog post of placing Sid.
Everyone else has said amazing things that I really can't add to.
My husband went into care 1.5 years ago and again as others have said, it does get somewhat easier - "easier" is not the correct word however gets less agonizing. It is still hard though.
Please listen to your body. If you need to sleep and sleep do. As you have said you have much grieving to do and your dear body hung in as long as it did and is now saying, "Enough we need rest and healing." So glad to read you went for dinner and a manicure!
As a RN I also know it is common for people to complain to loved ones about nothing being done or if it is done, they are doing a poor job. It is my experience it is like leaving a child at kindergarten. Heart breaking and when we are not present, they get involved somehow. Dear Sid will find his way and so will you.
Thanks again to everyone. I know I have been absent on the boards and in writing blogs, but this experience has been emotionally more than I have been able to handle. I have been retreating to the bedroom, curling up and resting. In between fielding phone calls from the nursing home and visiting Sid. It's only been a week, so I have a long way to go. I can't thank you enough for your support. It is keeping me going.
FYI - Sid's new roommate is a man from his Day Care Facility. They have no idea who each other are.
((Joan)) Don't worry about keeping up with things right now, just do what you need to do for YOU. I think of you and Sid every single day. ((love and hugs))