I know I am not alone. Does anyone else get tired of AD. It is my life. I am 72 and there is nothing else in my life. My kids, relatives, friends call and ask what is new. Nothing is new. This is it. We all have other problems. I will have a cast on my arm for the next six weeks, I have had it on for two weeks already. I tripped over my husband shoes. I do all the driving,cooking, shopping, bill paying, banking, everything.
maryd: Try to keep your faith and your spirits up. We all know it is difficult and we all are so tired. For me it is like the first time in my life I feel completely out of control and I don't like that feeling. There is no time for "me" I don't get to do what "I" want to do for a day. Maybe it is time I look into day care. Hope your arm gets better. Take care.
I am feeling down myself tonight and decided to sign on and found you. Sorry you are having to go through so much. It is especially bad, I know, when you get hurt or sick. About 2 months ago, I was not looking where I was going and fell over the dog and was on the floor in agony with my knee beginning to swell up while my DH was sitting just a few feet away unaware of what I was going through. It is like living alone sometimes except when you get hurt or feel sick you can't stop and go to bed. Tonight I was thinking about how grateful I am that I don't have to get up and go to work in the mornings. I don't know how other people do it. Monday my DH will turn 67 and he will have had AD for 8 1/2 yrs. When I think of years ahead it is too much so I can only deal with today. I do pray for strength and stamina to get through each day. My time is generally after the morning duties (toilet, laundry, shower, meds, coffee) and I can say my prayers before getting breakfast. We all need some special time and I hope you can find some for yourself. I hope you can draw strength from knowing we are all with you and you are not alone in this. I hope you have a great evening and good sleep waking up refreshed.
It must be the moon...I have been so down all day...and there are things need done and my attitude is I just don't give a fig. DH always asks..Can I help with anything? Well hell..if a glass needs to go to the kitchen you DON'T NEED MY PERMISSION TO TAKE IT OUT THERE! The obvious escapes him..He is otherwise pleasant and not a lot of trouble in so many ways others have to contend with. But I have to fill the truck, go to the bank, do the laundry and ironing, get the groceries etc..and I think what gets my goat even more is him telling me what to do...feed the cat..I am the only one who ever feeds her..lock the door etc...you get the picture. I feel like a slave in a benevolent prison. Then today what do we get...a call from one a friend of DH..called to say another friend had not heard from him and wondered how he is..said DH had not called in awhile..the one called said he had not heard either..DO YOU THINK EITHER OF THEM COULD PICK UP THE FLIPPING PHONE AND CALL MY DH? For " crap sakes" as my cousin would say, these people who think a person is normal with AD just make me want to spit tacks. Oh yeah..and then the one from FL goes on all about how he is taking his wife on a cruise for her birthday..to Thahiti..never been there..Guess I could go if I drop into the local travel agent and get a picture book.
Yes I know the feeling of no time to do what I might want to do..and then I think what DO I want to do and do I have the energy to go do it? I hurt all over sometimes I guess from the stress..maybe fibro..And sleep? I sleep but not well with one ear open and so much on my mind. It is just the sameness of every day..same ol' s*(&T different day...I'm going to the doc on Monday for a skin thing and I will mention the overall situation and see what he recommends..but it better not be see a counselor who has never been here..I think if one more person who does not deal with AD tells me what I should do or ought to do I might slap them till their hair and teeth fall out.
Mimi, we've all dealt with the "civilians" who don't have a clue about what we're going through. We like to think that people are more aware than they used to be, but the same misconceptions are still out there. I finally told an old friend of DH, in an e-mail, that he had AD and have not heard back, not one word! And that was a couple of months ago.
Me, too; I'm tired all the time for same reasons given above. Moon isn't full; so I can't blame that, but earlier this week, all I wanted to do is sit and cry--so I did. Hb said, "Stop being so silly. Don't do that." I left the room and went to another for my pity party. He followed, hugged me and said, "I'm sorry you really are upset." I don't generally cry "in public." Couldn't help it. He asks if he can help with anything; I give him a simple task: "You can do that." Bought an electric weed trimmer last night as I lack the strength to pull cord on gas one we have. Working in yard, hb again asks how he can help. I told him I was doing fine (well, I was fine w/trimming). He followed me around for awhile. I told him he could pull dead blossoms off petunias; tho't he could understand that. Maybe, maybe not, but he went inside.
I am tired too. Tired of sorting things out to move, tired of packing things I want to keep and tired of waking up early and can't get back to sleep, tired of this hot and humid weather. Of course DH is no help. The only thing he has done is move clothes and shoes around in his closet and chest of drawers. And tired of the same questions from DH, like right now he asked when I was going to wash clothes. The same as I do EVERY week, sheets and light colours tomorrow and dark colours and towels on Saturday.
Something other than the "moon syndrome" must be going around...I have had all of the above feelings for several days. When it pill container filling time arrives, I think didn't I just do this? The daily monotony is what depresses me..joint pity party time?
Tired of AD? Tired of doing everything? I wrote a blog about that a few weeks ago - I am damn tired of living in DemetiaLand surrounded by dementia - http://www.thealzheimerspouse.com/Surroundedbydementia.htm
During the last couple of months that my husband was home I had an aide come in. It saved my sanity to go out once a week and do something, anything other than take care of him.
I look back now and I know that the very occasional something to look forward to was a life saver. Find some way to do this for yourself. I should have brought in help a lot earlier.
kathi37...yes, indeed. it seems john and I didn't qualify for any of the help some folks talk about recieving here. Decision was made FOR me that John should go to a nursing home after his last hospitalization. Since his passing, I didn't realize how TIRED I was, even though I wasn't the constant caregiver. The last few days have been so unburdened. Like a weight lifted somehow. Can't quite describe it. Now, just tired because I need to recover from this ordeal. Now, onto the next battle....Social Services and my Medicaid fight.
I started an email yesterday but then didn't send it. I was so ticked off that I sounded pretty mean. I will send emails to the people who send emails he never reads now since he really isn't interested a group mail and lay it all out there so they can take the time to call him. And to warn them NOT to take up overnight visiting invites unless I clear it, after all I am the one who has to do all the work.
Tomorrow I have to go pick my husband up at the nursing home after three weeks of respite. I'm not ready. I'm still having to take a nap every day just to make it through the day. Some days I take two naps, and still sleep through the night. I did not realize how far gone I was with exhaustion until I was able to sit down without having to jump up and do something. I think my jumping days are over permanently.
Another thing I've realized is that my ability to get things done in a timely fashion is also gone. Even something as small as making a telephone call seems like an impossible ordeal. It's like all my internal resources are gone. I've used them all up on one small (or big) crisis after another, after another, after another…. Some days I feel like I'm nothing but an empty shell of the person I used to be. I've used up too much of myself being a caregiver.
No wonder so many caregivers destroy their health, or even die, because of being a caregiver. Tired seems to be a very small word to describe how completely exhausted, burned out and used up you can get from doing this. And it doesn't help any when people have no comprehension of how hard this is—and don't want to ever understand what you are going through.
Jan, it is getting harder and harder to pick up my husband after respite. I have had respite monthly since October, and it has kept me from exhaustion and allowed me to have time to spend doing things not related to AD, and to realize that there is life besides AD. We get so wrapped in providing care that we forget that we are a separate person, and we have to take good care of that separate person. And we can do it and still provide for our spouses. It is called survival. It is not selfish. It is not uncaring. It IS what our spouses would want us to do. They didn't ask for this disease, and wouldn't want to live like they are living if they had a choice. But I have never been so tired in my life. Even with respite.
I have gotten a hospital bed (provided by Hospice) in my dining room (having my son take my dining room set to his house) and have moved my husband's recliner beside the bed. The dining room is adjoining our den where the big screen TV is located as well as my computer desk. He's been sitting in his recliner in the new spot for a few days now where he can see me and the TV - essentially we moved his chair back 8 feet. Last night was the first night in the hospital bed. I slept in my recliner 8 feet away (it is as comfortable as my bed) and that way he could see me and I could see him. This morning, instead of having to clean and dress him and put his arm around my shoulders and walk him the length of the house to the dining room, bearing part of his weight, I was able to stand him up, partially turn him around and sit him in his chair!!! I don't feel tired at work this morning!!!!! YAY!!!
I don't have it anywhere near as bad as those of you who are providing total ADL care, but I also did not realize how exhuasted I was until I got sick and HAD to stop. I was running between here and the ALF every day to either take my father somewhere or go to a meeting related to his care, and coming back here and waiting on Sid and his broken foot. Too dangerous to let him walk much even with the walker. Then running, running, running to errands, groceries, more doctor's appointments for Sid. Finally, last weekend, I crashed and couldn't get out of bed. Stayed there for 2 days, feeling only slightly better on Monday, worse on Tuesday,and yesterday, I finally went to see the doctor. Severe sinus infection and ears filled with fluid. She gave me a strong anti-biotic and told me to go home, lie down, rest, and don't get up until I feel better. I get up to give Sid his meals. Other than that, I'm in bed, or check in at the computer as I am doing now. When I do get into bed, I sleep. And sleep. I figure my body is telling me something, and I am going to listen.
Sid keeps asking me how I feel - he says he worries about me, but then forgets that I'm sick. I guess this could be considered funny - Every day, he told me to call the doctor because I felt so lousy. The night before my doctor's appointment, we were sitting in the den, and I sneezed a bunch of times. He said, "Are you getting sick?" I guess that qualifies as an "alrighty then" moment.
My husband is a runner. He is not coming home from the nursing home. If he hadn't been stopped 10 minutes after he got away from me he would have died the day before he went to the hospital.
No one except this group could understand how glad I am that he can't come home. I'm still falling asleep every day after lunch. One of my legs acted up this week and I'm finally going to the orthopedic surgeon to see about taking care of it. I'm only just beginning to think that it might be a good idea to have something to do a couple of times a week, or that doing that is even possible.
FayeBay, if he is putting a fist in front of your face, you need to get him or yourself out of the house. The next time he does that dial 911.
FayeBay, it sounds as if you are to the point you need to put yourself first instead of your husband. I agree with Starling about calling 911. But maybe before it comes to that, you need to call the Alzheimer's Association, your Department on Aging, or your doctor and see if they can help you get some respite. You need to get some rest.
FayeBay, I urge you to let your doctor know how tired you are and tell him that you need some help right now. He needs to know what's going on. Don't forget that you are his chief concern, and he will want to ensure that you are safe. Tell him there's going to be another patient if something isn't done. You have to have some respite or you're going to be sick, or worse. Please, FayeBay, don't let this go on another day.
JanK, I could not have said it any better than you did. Although I only found out last year that DH actually had AD though from descriptions I gave a friend of mine who is an RN and whose DH was diagnosed at age 57 and is now in the NH kept telling me it sounded like...AD. I kept saying no because my mom died of it and it was so different.However, over the last several years, I can recall myself complaining about various things that DH was not doing that he should be...ie cleaning his tools in the garage, some things with yard work..you know the manly things. It seemed he was only interested in doing what he wanted...and he loved running errands to the grocery store..I would love the errand running days again. It did not dawn on me that his not getting it on how to use the DVD or learn to use a computer even for just email, or how to reset the TV after a power outage, how to really use his cell phone...the excuse I always gave was " well he doesn't use it as much as I do..." and at the same time it was ME stopping what I was doing to take care of these.. I would complain about how fragmented I was..not getting a task completed any more..and I hate being on the phone...Everything you posted and described was going on with me for the last several years.
The one thing that caught my attention is the napping..I always feel tired too and will drop off as soon as I sit down...aches and pains are creeping in...must be from fatigue...I feel kind of lost and alone too..I see friends busy with their activities, family and friends coming to visit and have lots of fun in a normal world and then there is us..Inviting folks in for dinner is a MAJOR evolution and a drag since DH just goes quiet and it just feels strained..and invitations to friends homes now is few and far between.
Yep, worn out, used up, empty and threatened with financial ruin..lots to look forward to.