I am not there yet, but I know others have expressed similar feelings.
maybe I am - I am exhausted dealing with not just hb, but sister who had stroke and resulting memory loss and brother who has fried his brain on drugs.
Ann, not a good way to be feeling. If you haven't talked to your pcp, next week would be a good time to ask for something for yourself like Celexa or another anti-depressant. If you are already taking one perhaps a different one would be advised.
Celexa litterally "saved my life about 5 years ago" when I was having a bad time. I am currently weaning myself off it. It is not a "forever drug" just a temp. until things get better - and I promise you - things will get better. Hang in there....We caregivers have "super reserves".
I recently placed my husband. It was the two weeks from hell between his anxiety and behaviors and dealing with the hospital and the nursing home. But I'm still feeling the effects of being so tired. I think that I'm just allowing my body to express an exhaustion that I've been building up for a couple of years.
It is possible that you aren't depressed. That you are just tired. But Imohr is right. Call your doctor. Being tired all the time is not normal.
NO. I never feel that way. No one will look after him like I do. And he would not respond to them as well as he does for me either. What gets to me is the sameness of every day in that there is not a lot of stimulating conversation. But he is finding all sorts of good movie channels on TV so we are doing that. Got him out in the yard to check his apricots and figs and apples today too. He is a sweet man who appreciates everything and so far is not difficult in anything but the medications which he has always hated to take. I am lucky he is doing so well so far. The doctors said the only real issue I would face is he is stubborn but he is also trusting me so we don't have any problmes with money, driving and things like that. I just miss the things he used to do that were so helpful.
I think that when we are totally and completely burned out and exhausted. Yes, they could get better care. I do not think that I was a good caregiver in the final weeks of my husband being home, I was too tired. Now, I am getting some rest at night (he didn't sleep but a few minutes at a time day or night), he is getting good care and I am providing the love. For us it is a win win situation.
It really concerns me to read your thoughts about wanting to sleep and not wake up. Yes, you can be that tired. I've found the saying "Fatigue stops all positive thought" to be absolutely true. But maybe you need a break from caregiving—right now, before things get any worse for you. And maybe it is time to think about placement if you are feeling this way.
I'm worried that this isn't just being extremely tired, but also being depressed. Depression can be life threatening. It's hard to think clearly when you are depressed. Please don't let these feelings get the best of you. Call your doctor, or if the feelings are really bad, go to the emergency room. We don't want to lose you to this terrible disease.
Please check back in and let us know how you are doing.
Annemyway1157, Yes,I certainly have felt that way lately. the days are long & i welcome that fact the my DH goes to bed early. it is my only peace & quiet. Some days I think it would be a great escape if I could get amniesia. I'm out looking for it everyday, but haven't found it yet...lol...If I couldn't find some humor I would sink into a deep depression. Everything is an argument. From the way I dial the cell phone to the street I take to get to the store & back!! He physically & mentally exhausts me. We are going on a short trip & i am having him sit in the 2nd row captains seat of the van & watch DVD movies. How much of this daily terror do we have to endure in the name of love & wedding vows?? I hope you get a break soon. You must take some time for yourself. I take one day a week that I go to the shopping mall for a few hours to re-coup for the next round. God Bless you & take care.
Thanks for all of your comments. Yes, I am being treated for depression and have for some time now. My doctor wanted to admit me into the hospital some time ago, but of course, I had the excuse of no one to care for my husband.
I'm trying so hard to get out of this funk, but nothing is working. My son wants to visit with his new girlfriend, but I just can't deal with trying to clean the house and having everything ready.......No, it doesn't matter to THEM, but it does to me.
Injuries don't help either.......I caught my husband just as he was about to go down......Now I've had constant back pain since May 30th. ----More PCA for him, so language is still there most of the time........Try explaining THAT to someone who doesn't know a thing about AD!
I've embarrassed myself by asking for help.............Everyone said I should do that and there MUST be something out there........Well, there isn't. Money? Forget about it. The house will need to be sold no later than May 2012 and I have so much work to do to it before it can go on the market.
I do try to remember all of you...........Thank goodness for you!
Ann - you can be that tired. After 3 years of caregiving for her hb after a stroke, my sister literally slept for the next 6 months. She only got up for bathroom, occasional shower, to pay bills once a month,etc. she had a stash of nutrition bars and snacks in her room, so found very little reason to get up. So yes, you can be that exhausted.
As for your son, tell him you would love to have him come visit his dad and you will take some respite while he is there.
Charolotte....... Thanks for your message. There is no doubt that my son would 'entertain' his father during his visit, but he is bringing his new girlfriend......We haven't met her before and I have this "thing" about my house being a mess! I know, I know........it doesn't matter..But, I can't phathom how I would feel if it just would be cleaned--poof! Again, it is just me.......but this embarrasses me so much. I was always the one who never had a speck of dust. Now, you can't find a place that doesn't have build up!
I finally took a shower and drove to the store.....husband in tow. What a job it is, however, tends to be the only social life I have.
We have been invited to a party tomorrow afternoon.......It is a 90 minute drive each way and is at a camp on the lake. Why don't people understand that I worry about the lake? I've actually been told to just 'not worry' and let him do whatever he pleases.....he'll be fine... Can you imagine what might happen? I guess I've just learned how to cover his behavior so well that others don't see what I know! After 3 years of diagnosis and more than 10 years of obvious symptoms, it is second nature!
This is the first day that I am actually starting to shed tears. Gosh.......after all these years, perhaps we should ready ourselves for a flood!
Thanks so much everyone........Just a rough period, I'm sure.......BUT you are the only people who really get it!
Ann, TELL your son, YOU need help NOW and are NOT up to entertaining his girlfriend (or anyone else) just now and to come ALONE. If he would do that, help you get your house in a little better shape for YOU so YOU would feel more comfortable having his girlfriend come a little later that would be good( depending upon how far away he is). The fact is you need HIS help with HIS father NOW..HELP, you are not up to being a social director now. It sounds like your son needs a reintroduction to your situation. If he does not live far away perhaps he should be coming around more often. My DH is not as far along as yours and I find some days I get really tired since I worry and can't sleep well some times, especially with the elder care lawyer and issues I am facing now. The sad fact of the matter is I don't have the stamina to host friends and family and I am not shy about saying so. You need HELP right now not social obligations. In addition, how will your DH react to the girlfriend? Does company work out ok or does it cause a problem? Is there someone who could come stay with your DH while maybe you meet your son and his GF for lunch somewhere near by? I would bet once he sees how tired you are he and his GF might just reconsider what they are thinking. I just bet they are thinking we will come for a short visit and it will all be fine..and it might not work out that way at all. When my mom had AD my dad asked a cousin of his to "drop by" for an afternoon visit..My mom was not that far along but had issues that went back to her mother in law..and it was not good. So here comes this perfectly lovely couple and when my mom learned that the woman ( a college grad age gal) was an _______________, my mom pushed her off the porch and announced she would not have another _______________ under her roof and stormed off.Scared the crap out of the young woman who never came back to visit again.Sometimes people do not understand what they are asking or realize the possible results. Just my 2 cents.
Mimi..........Our son is still at college and is 500 miles away. His girlfriend will be in another country until Dec, so he wants to introduce us before then. Actually, he does understand........It is just that what the house looks like doesn't matter to a college kid. He's grown up watching this disease take his father, so yes,he knows. He's been working at school, too, to help us out with finances. I don't think he wants me to be the social director....in fact, we'll probably see very little of them......But, the condition of the house still does matter to me.
That being said, my husband's daughter is just the opposite. She's the one who blamed me for the disease.
My husband misses our son so much......It is so hard for me to say no. If only I didn't do such a good job of hiding this disease from everyone! I guess since I'm blamed for it.........not planning for it........that I overdo it by trying to cover.....I'm sure you all understand that.
I am so tired of hearing how horrible this is for my husband. Yes, it is horrible for him, but hearing how it shouldn't have happened to such a smart man........Argh! This is a family disease----but....the only family I have left (parents have died now...2 years ago) is my son. My husband's family actually think that if he's contining with the BAP study, he is getting better. Gosh....these are the people with years and years of college educations..........yet, they look the other way when it comes to what they see as a failure.
Again, thanks for letting me vent AND not proof-read!
Ann,let them come - they will deal with it - house not cleaned and all. They should know about your bad back, taking care of DH, etc. Just let it go - and try to enjoy having them with you. Life is too short. And Bama is right - that dust does protect the furniture! I was always a stickler for a clean, clean house, everything in its place. Not anymore. I do what I can, when I can and forget it. I do hope you will agree to them coming and just do what you can. You will enjoy having your son there for a time. Hugs to you.
Good point, Vickie....I need to let go........I'm trying so hard.
One thing that I didn't mention about my son......He's been working on both AD and Liver Cancer/drug delivery at Cornell. Sometimes it is hard for me to ask any more of him........He's a good kid.
I understand the feeling of anger you get when people say how awful it is for your husband to have this disease. Don't you wish people could see that it is also horrible for you too? All of my husband's doctors have said to me that the disease is the hardest on the family/caregiver NOT the loved one. As time goes by they don't realize what they have lost, but we have to stand by and watch.....
Ann, regarding cleaning your house, you have all you can do taking care of DH. Today our daughter and her husband came to have brunch with us. The breakfast dishes were still on the table, the coffee pot unwashed, the bed barely straightened. BUT, the important thing was to be together with family. They ignored the mess.
Ann, I agree with Vickie...let them both come for a visit. It sounds like you are so fortunate to have such a supportive, thoughtful son. You know, his girlfriend may be the same way...I mean he is attracted to her, and thinks enough of her to bring her home, so it may end up to be a good thing! This disease is awful though, and it plays havoc with so many of our emotions...please be good to yourself and take care.
I think the advice you have been given is exactly right. Your husband and your son's father has AD, you are a caregiver and a spouse that sees and deals everyday with what is happening. I feel sure that your son will understand and the girl he has with him will be understanding as well. Don't miss an opportunity to be with your son because the furniture "protection" is spread out!! (I like that reasoning...never heard it before but will use it!). Your son sounds like such a wonderful young man. You must be very proud of him. We, as spouses of people with AD, should remember the value of relationships with the ones we love. I say go for it. Enjoy what you still have.
This reminds me of a question someone asked me recently. "When do you decide there has to be a life for YOU? How much longer before it will be too late for you to enjoy a life without this pressure?" I've been mulling that over since the question was asked.
I've never been a Suzy Homemaker w/a place for everything and everything in it, but we tried to keep things relatively neat and tidy. Guests coming, whirlwind surface cleaning at least. I still get nervous if folks are coming--even family; so I understand your feelings, AnnMW1157, BUT I agree w/others at this point. Tell your son and girl-friend to come. I'm sure they would even help clean up a bit if they saw it was something you need help with. Since he knows AD from the inside out, I'm certain he's told his girl-friend, and I expect he's chosen someone who shares his values. Relax and GO FOR IT!
Oh Ann, I can't tell you how sorry I am that I sounded so strong where your son is concerned..Somewhere I missed or forgot how far from home he is. The fact that he is aware of his dad's situation and that he is so touched by it I think means he would have told his GF about this, especially if they have a sort of serious relationship. I understand you would not want to have them stay at a motel/hotel when coming from so far to visit. And I don't think they would expect to be entertained...I would suspect your son would come with the thought of being helpful in anyway he could for both of you.
I think I would still impress upon him so he could sort of clue in his GF, that you are so far behind and you could use the help. Maybe he could help get the car tuned up or getting things in the garage sorted out or maybe something in the garden that needs done, something he and his dad could do together. Maybe his GF could help you with some things you would like to do, maybe just go to lunch with her something refreshing for you.
In the meantime..is it possible to get a friend to come help sort of ready a guest room space and a general area and then just close the doors to the other rooms? I kind of think all of us need to develop, hard as it is, a realization and acceptance that we have a really important job at hand and the house, yard etc just comes second and if our friends and family are critical then that is their problem..we are doing the best we can under conditions they cannot even imagine.
Just now I got a call at 45 past 8 from a neighbor who wants to go for a walk...well fine but I told her I can't do things on the spur of the moment...she said , which is true, that in an email I said I am usually up early so she assumes I can just go...but anyone who has an AD spouse knows that is not the way our world works...even with plans things go haywire...she got sort of sniffy sounding and said well Im off then good by...so there we are. Her 86 year old relatively well mother lives with her...this 86 year old has a new car and still drives..big difference in our worlds and yet she thinks she understands......
Good luck and again I am so sorry for sounding so strong....
I spent all day cooking and cleaning my house yesturday. SO tired afterward. Still need to clean up my office and studio, though. Another day. Lately, I too, have been abnormally tired. A new antideppressant was added to the Prozac. I don't think any of it does any good. People notice I'm getting kind of mono-toned, I have no interest in ANYthing but try to get up and DO something. Can't wait for it to be seven or eight o'clock so I can justify cuddling up in bed with my cat. It's not even DARK then. In the morning, I would rather lie in bed and be left alone. I believe that all the stress and forboding, anger, feared debt, and my upcoming hearing this week with Social Services (who will determine John's elegibility for Medicaid) is turning me into someone I don't know anymore. I'd like to lie down and just not wake up, too. Everyone tells me this will pass. I just feel too beaten down emotionally over the past several years and lately. I just guess we're supposed to get used to it. I dunno.....People assure me it will get better. I'd like to see some improvement, something positive come out of all of this soon. That's just my input.
Yes, I feel too feel tired, numb... just going through the motions. Working 2 jobs, caring for DH, doing all the household chores... it's exhausting. I recently had some minor surgery and couldn't wait to be "put out" for a couple of hours. I've been on antidepressants before, but they just seem to make you even MORE numb and tired... Eventually I guess there will be a light at the end of the tunnel. Stunt girl I can relate. :) When I get up in the morning I am already looking forward to going to bed that night!
Yes ago when I worked in a small town hospital, there was this old doctor that would admit people for 3 days of sleep. Most were depressed and at the end of their rope and I am sure there were other reasons. Didn't matter to this old doctor. He would put him into a drug induced sleep where we would check them every 4 hours, wake them every 8 for vitals and potty break then drug them up again to sleep. Most never remembered us waking them up. He might be on to something - old fashioned medicine. This was a doctor's who remedy for a fussy baby (not newborn) when all medical reasons were ruled out, to dip their pacifier in rum to calm them.
I think many here would love the three days of solid sleep.
Charlotte, I have thought about something to take to make me sleep through the night but I get up at least twice to go to the bathroom and I am afraid if I take something I will wet my bed. I am so tired especially with trying to get organized to move and of course DH is absolutely no help. Do you know if there is something out there that I could take and be able to wake up and go to the bathroom? Sometimes I have a really hard time going back to sleep.
Charlotte, I for one, have taken Ambien for some time now. It promises up to 8 hours of sleep, but doesn't affect me that way. I get up a couple of times during the night, too. The Ambien doesn't affect that concious need to "go" and I wake up for that just fine, then go back to bed. Guess it works differently with everyone. I've noticed, too, that I don't dream anymore, unless they're ugly nightmares...usually about dealing with family and John while he was home. I wake up screaming and throwing pillows, hitting things. Awful. Scares the hell out of the cat! (oh, and I only take the little 10 mg ones. And its now generic so it won't break the bank!
Jean, I take 3 things to sleep (at different times). They are 3mg melatonin or a couple Valerian root or sleeping aid (diphenhydramin HCl 25mg). There is another sleep aid OTC pills but it doesn't agree with me. I also take 2-3 ibuprofen and a chlortab (antihistamine) with it. If I don't take the chlrotab I wake up with a sinus headache. I try not to take ibuprofen except at night. I can't take it in the morning cause thyroid meds are not suppose to be taken within 2 hours of ibuprofen. I too get up during the night, usually minimum 3 times, and do not have a problem going back to sleep. If my back or muscles are hurting a lot I take 4 ibuprofen and 2 valerian root.
I have trouble falling asleep at night and I have used a 1/2 tablet of Ambien (10mg) to fall asleep and have not had a problem if I need to use the bathroom during the night. I have also used the sleeping aid that contains the ingredient that Charlotte mentioned. I only take 1 to 1-1/2 tablets. I have found that melatonin doesn't work well for me.
Okay, so my son and girlfriend were scheduled to arrive tomorrow.......He called and said they would probably arrive tonight.......SO, in this massive heat that we Vermonters DO NOT LIKE, I rushed to mow 3 acres and try to do a bit of weeding, watering, etc.....BIG MISTAKE! Of course, mowing takes time and I could see my husband sitting in the chair and watching.....Well, he got up and decided it was time to clean EVERY closet in the house. Of course, his clean and my clean are a bit different. He has unloaded the contents of 3 bedroom closets onto to every bed of the house. There is no way in the world I can get this cleaned up before they come. I know, it doesn't matter.......They should she how I live....My son does know, eventhough it is worse now. BUT, this is the first impression for his girlfriend! I am livid! I know it is the disease, but, I DON'T CARE!
The last time we met a friend, they broke up. I wouldn't be surprised if this happened again very soon.......We are on a roll!---I know, if she really cares, it won't matter, but it has taken me so long to accept the way the house looked this morning, much less than it does now!!!!!!!!!!!!
There is an opening at a nursing home about 40 minutes from here. We are "visiting" on Monday morning. He needs to be accepted, somehow.... Please say a little prayer...
Thanks again for letting me vent because right now......I don't know WHAT to do!
I haven't written or signed on in a long time. However, I'm getting desperate. Ann's blog just hit me between the eyes. I feel the same way. The sameness is driving me crazy. Kenny has Lewy Body Dementia, diagnosed 2 1/2 yrs ago. I left my job as an RN 1 yr ago to take care of him. Besides memory loss he also is unable to walk. I lift him to a wheelchair. The only thing he can do is feed himself. But, actually he's pretty easy to care for. He sleeps until about 11am or so and doesn't get out of bed. I usually go to the store or walk when he sleeps.
I find it comforting to know that others understand. My family say they know but I know they don't have a clue how it feels to be so trapped. By noontime, I'm trapped in the house till the next morning. I feel so guilty to feel the way I do. Lately, I find I'm getting angry at him. I try not to let him know but it's eating me alive. Thanks for listening. I KNOW you understand. God bless us all!
I feel guilty many times, but I really don't know why. I do everything for him, just as all of you do for your spouse. There really is no reason to feel guilty, but if I say I need a break, for instance, he'll ask me "Why? Why do you need a break?" He truly can't understand. But, I just made arrangements this afternoon for a two-day stay at a resort with a spa and I'm going to truly relax and not talk about him. It will be respite where nothing about him will be mentioned for 2-1/2 days! I'm even getting a massage! I haven't told him yet, and I don't intend to until the time draws nearer, but I can't wait, and I promised myself I won't feel guilty. By the way, part of the reason I won't is because carosi and divvi told me not to, several times.