I've been really sick with a miserable, bone aching cold. Every time I try to rest he wants me, not daughter, ME. I try to explain that I need to rest, but 2 minutes later he wants something. I finally went into my Mom's room to lie on her bed and let our daughter handle him. His needs are almost constant now. Silly things have become oh so important, a bone for the dog, treats for the cats, remove a dirty dish from his chair side table, it's all urgent. Last night he sternly told me to "sit down for 5 minutes!" A minute later he wanted something, alrighty then.
It's been much worse sense his return home from the hospital. Last week he had a UTI, bowel obstruction and the bug that I am fighting. He seems physically a bit stronger, but much weaker mentally. He has a VERY flat affect.
Yes, yes, yes - They don't get it........They really don't. I have the same situation, and my husband is much higher functioning than yours. They don't remember OUR needs. They are like children who know only of their own needs.
This may turn out to be more than you can handle. He was in a nursing home for awhile, wasn't he? As Bluedaze said, will it be possible for him to return there?
Susan, there are days that I cannot have private time in the bathroom... Cruel as it may seem, I LOCK the door and go stone deaf for a moments peace..I know our DH are insecure and freightened but this need for attention 24-7 is hard to deal with..If he really needed something, I'd be the first to know... Yes, he does stand outside the door and rattle the handle and yell and I do get a dressing down when I return to life...but it's worth it and is what I have to do.
When I've been sick, he is utterly offended at that... Unless my daughter comes by, I stay in bed without as much as a cup of juice or a cracker... They are , afterall, in their own corner of the world.. I know this doesn't help much but want you to know that visiting this site is a wonderful thing..To be able to talk over these things with friends who are already there or soon will be , is consoling to me.. Above all, take care of yourself... Park him in front of the TV and you go for a walk or chop down a bush.. Believe me , THAT's liberating...
Susan, I understand how you feel. They really don't have any realization that others need to rest when they are not feeling well. The last time here that it really slapped me in the face was right before I had gall bladder surgery last spring. I was having a horrible, painful gall bladder attack (didn't know what it was at the time though) and our daughter was still living at home. She was on the phone to my son getting him to come home to take me to the ER and all my husband wanted to know was what was for dinner and when was I going to get up off the bed to make it.
It takes all your patience not to lose it when they seem so self-centered. I hope you feel better soon. I agree with Peggy, sometimes you just need to become deaf for a little bit :)
It was much to much for me to try and divide myself between the NH and Home. I was needed everywhere. Believe it or not, when I'm feeling well, this is easier. Soon we should have 5 hours of assistance 7 days a week, with an extra 5.5hrs for respite each week. This is provided by Elder Independence of Maine. Because Jim is nursing home eligible they will provide this help, it's cheaper that a NH so they are happy and caregivers get some help. I just don't know when it will start. He has a mild temp and is complaining of body aches that are worse than his usual atrophy pain. I do believe he is coming down with the same virus that has gotten the rest of us over the last two weeks. Thanks for all the comments, I knew I could vent to you all. Arms around, S
I wish I could hug you all and tell each of you that as hard as things seem now, when the end comes, you will remember being able to care for them as a blessing. I have had ever person who helped us tell me that I was my husbands angel, sent especially for him. I really believe that we were chosen amongst all the others our spouse has had in thier lives as the one who can handle it the best. We arn't taken anywhere by God that he won't get us through. I know this first hand as I just lost mine, and for all the stress, the fights, the battles, I stood up for my husband and gave him the best life I could, being very ill myself the whole time. Its good to vent, but we all need to remember that none of thier actions are purposeful. It just made my life simpler to remember, one day you will be grateful you did this and this is what you would have wanted someone to do for you. Just love you and care for you. Not everyone is meant to be a caregiver, but when you do what you can do and with grace, its so much easier and gives you more comfort. And all anyone can do is thier best and call in the troops when the fight gets tough. My helpers were all older than my husband and showed so much compassion. They all miss helping him now. And our hospice home had some wonderful people from the cleaning crew to the chaplin. I wish you the comfort of knowing that I have found peace and I have been at every stage you have. Love and hugs.
magnoliarose* How beautifully you gave that advice and I know deep down we all realize all that what you have said so well we do know. So far, I have been lucky in that for everything I do for my DH he always says thank you or I am so grateful for you..something sweet like that. He has always been the one to go out of his way for others, always putting himself or his comfort second to someone else. I guess that it why for me to see him with this disease, along with his other medical issues, is so sad. This is not to say I don't get frustrated at the questions or lack of depth of his answers when he says he doesn't feel "tip top" or "chipper". The day after his diagnosis I did something that normally I would never have done...my friend owns a jewelry store and I happened to stop in just to see her and share this news...while I waited in line I spotted a ring in the jewelry case..one I would never before been attracted to. I call it "IT'S NOT HIS FAULT" ring..it is white gold, and sort of an X design ( turn that X sideways) and one row is tiny diamonds all alike and in a row..the other is little diamonds of different shapes and scattered about..sort of modern art like..The stones all in a row and all alike are memories he still has in tact..the others are the scattered memories... The other thing I use is the breast cancer pink rubber wrist band. On it it says courage, strength, hope, courage. Somehow it just fits and is a great help when I start to get testy.
mimi what a beautiful reminder, the ring. I had a lot of days where I just lost it. But always tried to compose myself and like you, remember that this was a man who would do anything for anyone. I guess it was easier for me because I didn't have children and got to be home with him, not juggling a job and him. I had to learn to live off his social security to do that. But I have no regrets. We are all only human. But if we switch places for a moment, who would we rather be. I often saw fear in his eyes and I wouldn't want to have been in his shoes. I offered God to switch us many times, but it is what it is. I believe that we are taken to we will get through it. I am now wearing the first ring I gave my husband, back from when I sold Avon years ago. It has lost a few of its stones, but the center is still in place, I call it my love ring, because I love it, like I love him, even when a few of the peices are missing. You don't know what you can do until you are challenged, and I have done so many things in his care that I never thought I would have the courage to do. And my letting him go in for respite care/medication adjustment was hard, because I some how knew that this would be it. You can't go through this process with AD and come out the same person. Much courage to you all and much love!
You are all an inspiration to me... Proves again what a wonderful place this is..I am thankful for it and all of you...We just need to enjoy, a bit more, the good days... Kinda like money in the bank..Put away some good for when the bad rears it's ugly head... Love you all.. Peggy
MagnoliaRose, you are an amazing woman. We are so lucky to have you among us, I am lucky to call you my friend, mentor, family. I know I will do better when I feel better. It is just that much more difficult when you are ill and don't have the energy necessary to deal with this disease. Watching him worsen while feeling sick is awful. Thank you for so beautifully sharing your wisdom, knowledge, love and friendship. Arms around, Susan
Susan as awful as it is for you to deal with this now, your writing about it brought back a chuckle. My husband always had to check where I was and if I was asleep, he just had to talk to me. If I didn't wake up quick enough he would poke at me until I did wake up. Once my eyes opened he would start talking to me. What is so funny about all of that is that without my hearing aids, I couldn't understand a word he said..........
This stage does pass so take care of you so you can take care of him. ((hugs))
Susan, I don't know how I did it, I was so sick myself when he was in the hospice home. I left him long enough to run to the doctor,intercept the meals on wheels person who gave me lunch to take back to the hospice home and take a shower. I think our adrenelin keeps us going. You grow into such a different person near the end. I learned so much off this board. But its amazing what I have found on you tube after the fact, never thought to look there. Some has brought the comfort of knowing how many others have been on this journey but also it hurts to know so many people have it and theres still no cure in sight. My husband loved sailing, astronomy , music and history. I am surrounded by all the things he loved. Just constant reminders of how wonderful our life really was. He was my best friend, till the very end. And I miss my best friend as much as my husband. Tomorrow marks the first 4 weeks of his passing, and it still seems as if it just happened. Please let me know how I can help you. What I can say to give you comfort in this time, what I can share. Just ask. I never thought I'd survive a day without him, and I have made it this far. Rob got very verbal toward the end and his words were easier to understand. He told me over and over he loved me. Kept kissing me in front of everyone he could. But once he went to the hospice house he never spoke another word. I am glad we had those verbal days. Thats what I hold onto. My love to you!
Magnoliarose, again, thank you so much. I used to tell Jim that I wanted to die 5 minutes before him, because I wouldn't be able to stand living without him. Now as I watch my sweet man, fade away, I am faced with so much uncertainly. My 10 year old grandson always says "Stay in the Moment." He and I both need to work on this coping skill. It is not easy to keep my mind from wandering into the unknown. I've always been a planner, always had Plan B, C etc. in the back of my mind. Now.............agh. I just try and keep him comfortable, and stay near and be as strong as I can for all of us. What a cruel hand we have all been dealt. Arms around, Susan
Magnoliarose...that is your "IT'S NOT HIS FAULT RING" with the few stones that are missing...same as the memories that are missing. It would be nice if the AD ASSN would come up with something like that at reasonable price for the spouses..a ring or pendant...something pretty, not too costly and a gentle reminder that this is a disease no one would want.
All of you express yourselves so very well and I appreciate it. As you may know, I took care of my DW like you are (or have) and had the same experiences, but, they are now telling me that I have made her completely dependent on me. I suppose they are right, but, I didn't intend it that way and if I had it to do over again, I would do it the same. I would always be there for her, but, sometimes I think I would be nicer about it. Anyhow, she is now in ALF and all she wants is for me to be with her and it is breaking my heart for her to cry and beg me to bring her with me. Not necessarily home. Just whereever I am or am going to be. This is the hardest thing I have ever had to do and I get tempted sometimes to tell the children that I will bring her home and take care of her again. Then, I realize that I can't take care of her.
She also packs everything everyday and puts it by the door thinking that I am going to come and get her. People have been good about putting things back and we can only hope that this to shall pass.
Thanks again and I hope you have a good day tomorrow.
Dean, I didn't have much choice in having to do everything, my husband didn't get made dependant, he just totally quit doing things and no ammount of urging or prompting could have changed anything. And its probably the same with your wife. Had it been the other way and he could have done more for himself, I probably would have done it for him anyway. It is a very hard job to take care of someone unable to do it for themselves, but in the case of AD it is even harder. They cannot rationalize what they can and cannot do. Buttons are broken in AD that can't be sewn back on or fixed. We have all had days where we weren't always as nice about the situation as we could have been. I have regrets about some days, but in the grand scheme of things, those days were 1% of the 99% I was beyond kind and loving. We become selfless at some point , at least I did , but I have no regrets about it. If you are able to take her outside the ALF, maybe once in a while to just get her into another environment, she might forget about going home or not feel so stressed about it. Is there some way you can make her room feel more like your home. Decorations she liked or photographs. It may be she feels the room just isn't homey enough. These stages come and go so fat that by the time I had one thing figured out we would go into another stage. Its sad but this will pass. I will be praying for you!