I've been "lurking" a lot lately, but felt like I needed to weigh in on this one.
I placed DH in a nursing home almost 3 months ago. I miss him every day, but he's deteriorated to the point that he needs round the clock care. He can barely speak now, can't walk unassisted, has to be fed. I think he still knows me, but sometimes I'm not so sure.
The nights are the worst. Our 3 year old sleeps with me at night, and I get comfort from his being there, but it's not the same, you know? I think about the day when he'll have to go into his own bed, and it's unbearable. Then I'll really be alone, just me and DH's empty side of the bed.
Worse than nights are Sat. and Sun. mornings, maybe because DH and I used to lay in bed, I would lie in his arms. I keep thinking about how I'll never feel his arms around me again, and I can't stand it. He was always there to comfort me when I needed it. I think I took it for granted that he'd be there.
I know placing him was the right thing to do, but the loneliness is so hard, even though I have 3 kids in the house most days. I can't imagine how hard it must be to be alone. I should feel fortunate, but much of the time I just feel lost and alone.
Okay, I'm done feeling sorry for myself. I just wanted to commiserate and say I know how you feel.
Kelly-it is so good to hear from you. You're right about the loneliness. It's terrible knowing that there isn't someone you love to comfort you when you need it. Week-ends are tough. Used to be let down time to enjoy each other.
I think of you alot. I know your situation with DH, and having such young kids is so very difficult. My kids are 16 and 18, both still in school. But at least they are a bit older and can both understand and be helpful. I feel for all of us, but especially feel empathy with those of us that have kids so very close to our spouses who are right in the middle of the situation. So sad.
I don't know..... right now I am not sure how I am going to make it. This was worse than anything I imagined. And it didn't turn out like everyone assured me it would.
We only told him he had to stay for a couple of days.. for testing. We thought that would be a nice kind white lie to help him until he could adjust. I was told that they would help him adjust, comfort him, and that he wouldn't have to go to the psyche ward, that they had a doctor on call 24/7
None of this was true. It was a day nightmares are made of. He was more than ticked off, he was devastated and heartbroken. The more his kids and others tried to convince him of why he had to stay, the worse it got. He told me he hated his children and never wanted to see them again. He told them many things as well………….accck!! They said but your my dad! and he said I don't know you!!!
He looked me in the eyes and told me he would never forgive me *crying
He was so distraught, the head nurse had to ask his kids to leave. They wanted to be there. They were trying to tell him they loved him, he wanted nothing to do with them. "Those people" is what he called them after they left. *sigh
After they left, I tried another angel. I know he doesn't remember too much... but I was crying.. and that still has the power to upset him. I told him I was crying because my head hurt.. and we went with that. I told him I had to stay there for testing.. just like before when we stayed at the hospitals and hotels with all my surgeries and testing. I made it about me staying, and wanting him to stay with me. He reluctantly agreed to stay ONE night.
He calmed down some, but he still wanted to go home. I thought they would sedate him when he got so bad, but they didn't!!!!! Then they told me the doctor would not be there until tomorrow!! So he wouldn't be able to get any medication to help him through the transition. Then they said if he became aggressive, they would send him to the psyche ward!!! ACCCCK!!! I thought you know what…. Screw this! I went to the car and got the extra meds I was going to give the nurses. I told them, you may not be able to help him.. But I can! I didn’t dare give him too much, but my doctor said to give him more ..as needed. It was needed!! It helped a little bit. *sigh
So I had to stay with him. For 10 hours.... I had to listen to him cry, plead and beg to go home. Please, please! let me come home with you. It was brutal! Later in the afternoon I had to lay down. My head is screaming in pain. And here is where I believe God is some times cruel.
After more than 3 years of not having any real contact as man and wife. No more than a simple benign hug. Lynn... "My Lynn"... "the ghost" was released from his prison of Alzheimer's hell..... long enough to come lay with me on the bed. We cuddled for the first time in years........... fell asleep in each others arms.
now I know that is a gift! And I did thank God for it. But it is also so damn cruel!! Just when I am trying to let him go, he comes back! Briefly... but he was there.... I can't even begin to explain how bittersweet that was. I would give anything, anything! to have My Lynn back!! In that moment, I just wished God would take us both. I can't stand to see him suffer any more. I just can't!!! *sob
I called a little while ago, they told him I was having testing and would be back when I was done. He has zero recall, so he keeps asking for me every few minutes. :( But they said he is being sweet and kind to them, just very depressed. *sigh
I asked them to call me if he does get aggressive. I want to avoid the psyche ward at all costs!! right now, all I can do is hope and pray that the doctor gives him something to make this transition easier on him. I know they are trying to help... they keep telling me, it will be ok, he will forget all about this. The thing is I WONT!!! Ever!
"If thoughts and love can give you strength, you have plenty of both from all of us." yes joan,, it DOES help. Thank you all for being here for me. ((hugs))
Oh dear Nikki, I'm so so sorry. You are going through, ahead of many of us, where we will also be in a not too distant future. I'm praying that this day will be a better one and that you can rest. I know that when my time comes for this change, it will be a really awful day. I'm also going to pray that the doctors/staff use everything they can to ease Lynn into this adjustment. After all, he has a little boo boo that needs tending right?? the little sore? Maybe he has to stay long enough for that to get completely well???
Oh Nikki, that is just terrible.....I am so sorry all of you had to deal with this. His doctor should have prescribed Ativan or some other fast acting drug to take "the edge" off while the move was being made. Of course, we all know how much some doctors understand all of this.
I know you will never forget this, but remember, you are not the "bad" guy. The disease is...
Nikki, try to get some needed sleep after this ordeal. if nothing else, your dreadful experience has helped those of us who follow to get a script BEFORE they are admitted for ativan or something to calm them thru it. we all wanted it to go smoothly for you both. i am so sorry it has been to hard for him and you. please know we are thinking of you and hoping he will settle into his new home soon. hugs, Divvi
Nikki, this has to be the most heart breaking experience of your life. I'm so sorry things went so bad. Hopefully, today will be a little better. We're all thinking about you all the time. I hope the doctor gives Lynn something to calm him. And, you also.
Nikki, my heart breaks for you having to go through this. I know you are totally exhausted. Prayers going up for him to settle in quickly and for you to get some much needed peace and rest.
Nikki, I am so sorry things didn't turn out better for you and Lynn. I pray the worst is over with and you both can find some peace in all of this. You have proven often enough that you are a strong lady so I hope that strength with get you through the next few days. Hang in there.
Nikki, I am so sorry you had to go through that nightmare. When I placed my husband, one of his sons wanted to be there when I took him in. The facility and my husband's doctor recommended that I not make any kind of big deal about his going in and leaving him there so I said no to his son. When I left him, it was a quick kiss and I was gone. They had someone one-on-one with him the whole day. It worked out - we still had some of those "I want to go home" moments but he did adjust. The facility also recommended that I not visit for a few days to give him time to adjust. He was fine for visiting within a couple of days.
Hang in there, they do adjust. You can help him adjust with your attitude and actions. Pay attention to who visits him and how he is after the visit, you may need to make adjustments on the visitors.
As for you, get some of that rest you need so badly and do something to pamper yourself that you haven't been able to do in a long time, pedicure, haircut, massage, go out to lunch with a friend, go to a movie with a friend, clean out that corner that has been driving you crazy but you couldn't do it while he was still home - do something for you, it will help you get past some of the initial stuff.
Nikki, my prayers are for you at this moment. What hell this disease is! I dread the day when I will have to make this decision. Please know my hand is extended to you for comfort and my prayers are for your peace...M
Nikki, you and Lynn and his caregivers are being lifted up in prayer by many many people. "this too shall pass", the sun will shine again and you and he can have some peaceful times when this storm has passed. Be strong, rest, pamper yourself....... Phyllis
Nikki, I add my concern and prayers to the others. You are doing the right thing. Lynn will settle in, perhaps not as quickly as we all hoped, but it will come. Meanwhile, hang on, dear girl.
Nikki, I have not been able to get here until now, and I'm so sorry that you and Lynn had such a disasterous move! How dreadful for both of you! I hope that tomorrow is a better day, and that he'll have a better adjustment. That way you can have more peace, help your mother, and get some rest. You remain in my thoughts and prayers.
Sigh..... Lord but this is hard. I should say the nurse who told me their doctor wouldn't increase his meds until he saw him today, was wrong. I spoke with the head of the nursing home, a family friend.. Lynn was given extra medications, they were just waiting for the doctor to call in the order. He did! Just this nurse didn't know.
This all happened so fast 5 days! Our neuro was out of town, and the VA couldn't get him in. But yes, for anyone else who must go through this hell... make sure you have something to give them, before you tell them!!
They upped his seroquel from 75mgs to 275mgs....... he isn't being aggressive at all. While I am there, he of course still asks to go home, but I tell him I am really sick and have to stay there and would really like him to stay with me.He always agrees.... somewhere in there, he still loves me greatly. *sob
He is sad, depressed and when I am not there paces looking for me and asking for me. The staff is wonderful. When I got there yesterday someone was sitting with him holding his hand. Every single person I met knows his name, as well as mine.
He sees the doctor who will be his PCP today, and the psyche team on Monday. He is being wonderful to the staff, does everything they tell him, with a bit of his ol humor back. As heartbroken as I am... I know he has to be there. Yesterday he was so happy to see me, huge hugs... then we held hands and walked, watched TV together, had meals together..... I was there 8 hours, not once did he hit yell or swear at me. I am his friend again... and I can't tell you what that means to me.... k crying again... will come back to update when I can... much love, Nikki
Dear Nikki, maybe all the prayers we are sending for you both are getting some result finally?:) with the new doseage of meds he will mellow out some and you will be able to come to terms with his being there for his own/your good now. if i have learned anything its that we carry an 'aura' of energy that can be good or bad. try to stay calm and think good thoughts via telepathy to Lynn when you are around him (try hard:) with their state of mind in this disease, i really believe they have insights we are unable to fathom. i have seen it myself, when DH has myoclonous jerks i can yoga breath and relax and hold his hand and they dont seem to be as strong or last as long- he will pick up on your good vibes soon. be strong, you will get thru this like all the other travesties that have come our way, and things will settle down soon -take deep breaths and a bubble bath and relax! divvi
On the 17th, it will be 4 years since I placed Lynn..... so much has changed, yet at the same time it feels as if nothing has. It still cuts me to the core and the tears still flow freely when I reflect upon this time in our life. To this day I still struggle with thoughts of wanting to bring him home....
The most significant change is a good one though, Lynn has reached a place of peace and comfort. He is lost in his own little world, but it is a happy world for him. For this I am eternally grateful.
At the time, I honestly didn't think I would survive placing Lynn, but here I am 4 years later... still sad, still missing my husband, but able to see and feel the beauty in life again. It's not what I wish for, but.. it's enough....
Peace and comfort to all of you facing this gut-wrenching decision. ((hugs))
Nikki, you are so strong and gracious. Reading this discussion thread makes my heart ache - for you as well as the rest of us facing this eventuality. Thank you for sharing your story, painful as it is.