Good morning Janeie Don't know what's going on but I think most of us have reached a point where we think we can't handle another heartbeak or stress. We feel we have lost all hope of anything being right again. You can be honest here and we will try to offer help. bluedaze, Fl
Hi Janeie, yes please let us know a little bit more of what you are going through right now. I know a lot of us have felt that way before. I know in the beginning of this journey I was so dis through and worn out, that I was sure I couldn't make it another day. I also questioned why this disease had to come and ruin all our plans for our retirement years. Please come back and let us try to help you feel better
Right now, your future is "one day at a time." You can manage that. Let us know what's going on - chances are at least one of us will understand very well.
I can honestly say that I am at the end of my rope and there is no knot to hold onto. My rope has so many knots in it already that there is no rope left to tie a knot with. I am tired. I am worn. I am weary. And I see no light at the end of the tunnel. I thought putting Frank in an adult day care 2 days per week would help, but I also work a full time job, so no relief there except for peace of mind. Last night I told him that if he keeps me awake one more night that he was going to go sleep in another room. Didn't help. Just about the time I drop off to sleep he reaches over and begins to pat me to see if I'm still there. Nice gesture but not at 2 in the morning when I must get up at 6 to go to work. Somethings gotta give. Yes, I'm down, very down, today. Take care!
Like you, I work full time, and I haven't had an uninterrupted night's sleep in 3 years. I don't know if my body would know it could sleep 7 hours straight any more. <grin> But I make up for it by dozing in my recliner between 9-11 at night before going to bed severa nights a week. It seems to help.
Sadly, I HAD to leave our bed some time ago. Thankfully, he's sleeping through the night except for the bathroom trips. He'll come into my room to check on me (always rouses me) but leaves closing the door. Never thought I'd be the one to move out.
No, I cannot check on janeie, because she did not put her e-mail address in her profile. I wish I did automatically get everyone's e-mail when they sign up, but the software is not set up that way.
Stheford,
Oh, I am so sorry you are having such a rough time. You are suffering burnout, and you need help. Others have gotten relief from the "separate bedrooms" route, but I don't know how you do that if they won't stay in it. Can you check with the respite facilities in your area for someone to come in a couple of nights a week - they do have people who will stay overnight - so you can get some rest? Call the Alzheimer's Association - 1-800-272-3900- for resources in your area.
Any relatives nearby who could help a couple of nights a week?
Anyone else with ideas? I know many of our members have this problem.
My husband has spinal stenosis and sleeps in his recliner in front of the TV so that takes care of that problem. He complained I snored and kept him awake, which is probally true because I have woke myself up shoring. I also like to read in bed and he couldn't go to sleep with the light on so most nights I would get up and take my book to the couch. Also, I get up to the bathroom at least twice in the night. I bought him a craftMatic bed and put in the spare room and he used that one winter but not for a few months. It took me a year go get used to sleeping by myself but now I wouldn't have it any other way. lmohr
stheford-does Frank have any family that could spare you with perhaps an occasional overnight stay. That would also give them an idea of what is really going on.
I would ask the doctor for something that will help him sleep the night through - although you may have to put Depends on him - it would be worth it to get a good night's sleep. Something like Restoril??
I am with beenthere -- sleep deprivation is literally torture! Stheford, limiting his liquids after 6pm would help with restroom issue during the nite too. I do hope you will get some rest & relief very very soon!! Don't give up!! We are pulling for you!! And praying for you too!!
I have interrupted sleep as well. with all the h2o he drinks for bladder issues he goes 3-4time/nite. i started not giving much aftr 7pm and its helping some. and what is it about the 'patting' thing??? i get this so much and it drives me nuts! esp right before dawn, hes up and reaches over to pat me and does it over and over...sigh...i try to ignore it, doesnt help to say stop..i dont think he does it to be mean, he just wants to get my attention or maybe hes scared with no lites on. who knows. i couldnt sleep 8hrs thru now either, i am so used to it. i get up with him to go to bathroom so he doesnt fall. divvi
I wonder if they just want to make sure we're there. I'm always warm and it drives me crazy when he gets so close to me and puts his arm around me. Yes, the a/c is on all night and I'm still warm.
I remember when my kids were infants thinking if I could only get some sleep during the night I could cope with anything through the day. Was much younger with more bounce back then. I think I am still trying to make up for lost sleep when my husband was still at home and I was working.
We just found out that some of our bathroom issues (the going and going) are coming from a uti. My DH is also having more confusion as a result of the uti. I can see improvement already after 3 days on antibiotic.
magnoliarose, i am expert at UTI-we have cronic ones due to prostate issues. we take antibiotics daily and still get them. glad you found out early they can get quite aggitated and loopy when they have infection. now you know the signs and when to get to the dr. divvi
Today was our annual check up at the AD and Aging Institute. We have all sorts of issues I couldn't even imagine a year ago. Now we are in to the adjusting meds route, which for now seems to making a zombie of my DH even more. But, I'm SURE he will be up most of the night. The doctor said there is nothing effective for sundowning - OH NO! I asked her what happens when I can never sleep at night? "It is time to place him" was the answer. I just would put that off until the last moment - it would break my heart and break my pocketbook. We also are dealing with major prostate issues. I expecting the urologist (next Tuesday) to confirm my belief that this has become serious - but we will see. Last night I just decided to sleep on the couch. In a motorhome we obviously don't have too many choices (definitely no guest bedroom). That actually worked better than being in bed with someone who sits up and down all night long. BUT, he is so weak that I worry about falling, so when it is one of those 10 or so nightly trips to the bathroom I worry if I don't get up. It seems our traveling days are over - the doctor agreed with me we need to stick around our base.
Thanks, Bluedaze, its a cronic thing, i dont think any prostate operations are in our future so we take it as it comes. we usually have UTI every 3-4mos serious enough for 7days of potent meds but he usually recoups.
I am 63 - feel younger. I feel single, but there in that care home is the shell of a man I have for nearly 30 years been married to. He cannot do anything for himself. He has also had a stroke, so hasn't been able to talk for 2 years. He is barely walking - needs 2 CNA's to hold him up. He is eating pureed food. I pray that God will release him from this existance, because it is not living and he would not want to live this way. It is in God's hands and so far, God has allowed my husband to continue to exist.
For a solid year, I was up and down every single night several times. Even with 2 adult diapers, I would have to change the sheets 1-2 times nightly. My washing machine went EVERY day. Friends are now telling me I looked awful. I know I felt awful. Every time I sat down, I fell asleep. Once he got out of the house and fell, breaking and dislocating his elbow. While it is better having him in a care home and I am past all the guilt feelings (realizing that with their education, training, and experience, they can FAR better take care of him), I still get very frustrated.
I have started getting on with my life, but I do feel I am just stuck here. I have loved this man and I don't want to be frustrated and angry at him - he certainly can't help it. I have a friend, but there certainly can't be anything more, because as I am told often, "I am still married!" Sometimes I want to scream back at them, "you have got to be kidding! There is nothing in that marriage - we can't even have a conversation. You truly can't call that a marriage, can you?"
Judi, don't feel selfish. We have some widows that come here from time to time. And I hope one of them comes by soon, because you aren't alone. At this point you have done most of your grieving. You have started living life again, but you can't quite do that yet, so you are being pulled in two directions. And that alone is hard.
There is literally nothing that you can't say here. We accept the unthinkable because some of us have already thought those thoughts too.
My husband is no where as far along as yours is. He is declining extremely fast. My daughter has friends who's parents also have the disease, and there is no question that he is going down much faster than any of their parents are. And I've been thinking about AFTER. When something comes up that I can't do now, like travel for example, I think about if I would travel once this part of my life is over. I'm also thinking the unthinkable.
Believe me, Judi............I have dreamed of moving on with my life for about 2 years now. I still love the man I married....It is just that I know I have no future with him. So I believe it's natural for us to start the wondering and wishing for a happy future.
I also think something else that I want to mention. I think those of us who occasionally, or frequently, think about what life will be after this part is over, survive for it to be over.
I wonder what happened to janeie who started this thread. I wonder about those of us that are afraid to write about feelings we don't like to admit to. About hate, anger, dissapointment, living for future freedom. What about those like janeie. Where are they? Suffering alone? It's enough to make you cry!
A poem I wrote several months ago seems fitting here ..
Where Are You?
You are here, but gone from me Memories can no longer be shared Of the good times, the bad and The music we loved to share
Where are you? Love of my life, I miss you dearly But my life must carry on The mundane world I live in now Seems barren without you
Where are you? Do you feel free from it all? Does the lack of memory mean freedom for you? You're in your own world now And my life must carry on But without you
That poem made me cry, really for the first time since my husband has moved away. I know I am not suppose to feel guilty but he calls all the time pleading for me to come and get him. That really hurts because I am not suppose to be with him for my own safety. His driving privledges were taken away and his daughter put him in a very nice senior center with all the conveniences he'd need and somebody staying with him all the time. He would have been better off if he hadn't given her POA when his mine was okay, I believe? He doesn't like it there and is very angry and says he doesn't need babysitters. He said and keeps insisting that I said I was going to put him in a nursing home, which I did not say. I think he got scared when he saw a friend of his in one. Now, he might has well be in a nursing home because he hates it there and will not make friends. His daughter is finding out what it is like. I just feel very depressed and am going to have to give myself a kick in the pants and start going to the YMCA and getting out of the house and living my life.
Its hard to think beyond the now but I hope we all survive this to do the things we dream of.. Travel, work (again), breathe freely, laugh freely, find our friends or make new ones. But some of these things shouldn't be put off till later.. food for thought.
Good Morning everyone I haven't been on in a while not since my husband passed 3 weeks ago. but I saw this thread and in hopes the lady who seemed at the end of her rope will hang in just a little longer because once your loved one is gone there's nothing left but your memories and those need to be good ones of the time before this dreadful disease .Of the one you loved before all this. It can be so hard... I loved the poem wish I had something like that when we were planning my husband service. It was lovely .
Nanapapa, welcome back. I know you are going through a rough patch, but I'm glad you checked in, and hope you will continue to do so, if you can emotionally. We miss you.
I sometimes feel that I am close to the end of my rope. I've had a rough couple of weeks, been on the edge of tears for the first time since he was diagnosed almost 2 years ago. I can't believe he's going into stage 7 already. He has a cough (he has COPD), but it is not continuous like a cold. He has spells of being totally in that "fog" where you can't reach him, but so far they don't last long. He's counting on going on the Caregiver cruise, and I'm praying he doesn't get any worse between now and then! It will be our last big hurrah together.
Mary-you are a gutsy lady to take your husband on a cruise if he is truly stage 7. I consider my husband between stage 6 and 7. He is incontinent, only mumbles and while he is physically able to ambulate the mind-body link is gone causing him to be unable to respond to commands.
Bluedaze mine is between stage 6 and 7 in most things. He does respond to commands most of the time - if not mine, then my daughter's. My daughter will be with me and if he doesn't get any worse between now and then, he'll make it. I have to cut up his food, but he can still feed himself; I have to shampoo his hair and dry him off and direct his shaving; I have to make certain he has all necessary pieces of clothing on, but he still puts it on and then I straighten it up. He has accidents, but not every day, because we direct him to the bathroom often - and he'll wear Depends on the trip. As long as he has us and a DVD player, he'll watch his favorite movies, and we'll walk the ship and enjoy the shows in the evening (he'll sit beside me and sleep). The day we tour the Grand Caymen Island, he'll be happy to look out the window and see something new. He remembers how much he loved traveling and cruises. I know that there will be incidents, but hopefully manageable ones between my daughter and me. We've gotten his care down by now and read each other very well to pass off when one can't reach him. I got a suite so that we'll all be together and it will make it easier to manage him. Note: I am an optimist. I always have been. However, I am amazed that I am willing to bring him after our trip to England summer of 2007 when he was lost at the Dallas airport on the way home from England - after an 8 hour delay in Dallas - he walked away from us to go to a hotel because he wanted to lay down because his legs were hurting. He didn't realize that we could miss our flight; that he had no money or credit cards; it took 5 hours before the security police located him on the road walking back to the terminal from the hotel - (he had taken a hotel shuttle to the hotel, and when he couldn't find me at the hotel, he walked back!). That experience is one I'll never forget. So, why am I chancing this? I keep telling myself that it will be his last trip and he loves it so - plus my daughter and I NEED this caregiver cruise too. Wish us luck!
Mary you will be fine with the help of your daughter. and a much needed respite i know. yours sounds alot where my DH is stage wise. he does alot on his own but needs direction for everything to do it. like yours my DH loves driving and riding and looking out the window:) if i had a 3rd person to help with his care, i would be going as well. i still havent found one i would even pay to stay with him here yet. the agency cargviers are not what i would like as a person to leave him withfor a few days. so i am still looking. when tht happens i am outta here! :)divvi
ps mary you may want to consider taking one of the light foldup wheelchairs made of cloth?? this works so well when DH is tired or cranky and i need to be in public restaurant or mall he loves to sit and watch but doesnt always like to walk-you said your DH has leg pain sometimes. even on the cruise ship it may come in quite handy to be able to push him around to diffenent areas and not have to keep adjusting his seating arrangements. it certainly has helped us---just a thought. i know they have them on board for medical reasons i dont think they will loan those out though as only for med personell..! divvi
Thank you for the suggestion. He can still outwalk me, even though his is a shuffle. He wouldn't sit in the electric cart at the grocery store, so I don't know if he would use it. I may borrow one and check it out with him and see if he will sit in it.