I think I just need to talk. For the last couple of weeks, I have been feeling so low, very irritable, sad, overwhelmed, trapped. I don't seem to be shaking it off. I've been on an antidepressant for years (way before AD) . I've done really well, until now. I've even had the dosage increased, but it doesn't seem to be helping a lot. The sunny days usually lift me right up, but not so now. Anxiety seems to have taken up permanent residence in my belly (butterflies), brain fog (or cobwebs) my everyday companion.
Even being a person of deep faith (at least I thought it was deep!) doesn't seem to be helping me to rise above. I'm just unable to get in touch with it right now. I try to read words of encouragement, but I just mumble to myself "yeah, yeah, right". Helpless, hopeless about says it all. I see no light at the end of the tunnel, just darkness & fog.
Wow, I sound like a nut case, even to myself! I know everyone here goes through hell with this disease, I'm surely not alone. In light of Joan's present situation, my whining seems inconsequential. As I said, though, I think I just need to have somebody HEAR me, to be able to be honest about my feelings - maybe a shoulder to cry on? :)
I somehow need to find the motivation to do simple everyday tasks - you know, like laundry, cleaning, cooking! It concerns me that I have lost interest in just about everything that used to interest me - scrapbooking, needlework. I bought a new camera (Nikon L830), nothing fancy, just to be able to take some nice pictures - it sits in the case with only a few pictures on it. I can't concentrate enough to learn about all the features & settings. Oh my - maybe I'd better talk to my doctor, huh?
* Caregiver burnout * Depression - maybe you need a different one cause you can build up a tolerance for drugs so they no longer work * Menopause or other hormone imbalances
Could be one or all of the above. I think we all get to that place - maybe move in and out of where you are.
I don't even play games like I use to. Would rather read forums online (right now into the hystersisters.com site), research or just watch TV. I don't do much more than I need to. Making myself get out and walk is hard. I know I need it for recovery, but I use the heat for my excuse. I even tried walking at 8:00 this morning (got woke up by the lawn guys). I did a mile but it was too hot - 88 already.
When you life is on hold, especially for so long, and you know it will just go downhill, it is hard to be excited about it.
Mim, The anxiety and inability to concentrate might be a medical issue. That’s not my department but the nurses on this board seem very well-qualified and I'm sure they will have very good advice about what to do.
But I don’t want to diminish what you are going through. I just looked up your last post and I see that you are caring for your husband at home, he is unable to clean his teeth without help and has refused to allow you to help him. So now he has gum disease and cavities and needs to have a tooth extracted. On top of that, you have 3 major appliances that failed or are about to fail, your kitchen faucet broke and you have a leaky pipe in the basement. Did I miss anything?
I have been there, or at least in that neighborhood. Most of us are subjected to physical exhaustion, a pile of practical problems, constant stress, and nothing good to look forward to. And it goes on for years! People outside the world of dementia can often come up with positive things that can balance the negative stuff they face but our options are more limited. You have my complete sympathy.
Mim, I can so relate to what you are going through, although at the moment I am in a better place! And I think we all feel that way from time to time. Sometimes it needs medical intervention, sometimes we manage to pull ourselves out of it for awhile. I agree with Charlotte, it could be a number of things, or a combination. Myrtle has underlined some of your current difficulties - its no wonder you are feeling the way you are, when it appears that life is "going to hell in a handcart!"
You wrote, "As I said, though, I think I just need to have somebody HEAR me, to be able to be honest about my feelings - maybe a shoulder to cry on? :) When I got to where you are now, I asked my professional friends to recommend a good stress counselor. One, a social worker, recommended one she had gone to, and it was the smartest thing I ever did. Wishing you well.
I can so relate. I do hear you. I placed my husband and altho I do not have the 24/7 responsibilities the mental and emotional toll is still present because he is still alive. My situation seems to go like this: I will have a good couple of weeks or even a month where I am able to focus, take care of me and responsibilities etc and then something will happen like I took him to the doctor last week and my mood will go down hill. Last night I felt ill, today I had overwhelming loneliness and basically cried off and on all day. People say we have to move on with ones life but my question is how.? I talk to God And tell him my woes a lot. It is better since he is placed but am struggling with how exactly to move on. I am faced with the fact that being married for so long and raising 5 kids and 10 years of taking care of him I basically have few good friends. My entire life has been focused in others. Just taking one day at a time.
Thank you all for your comments. This afternoon we went for a drive to one of our favorite country farm markets. It was beautiful there, quiet, we (I) sat for a few moments by their pond, listening to all the birds, looking at the flowers - very restful. But - we had to come home! It was almost supper time, he wasn't really hungry (he ate three & a half doughnuts on the way home!), but it was 5:00 & he HAD to have something to eat. He eats by the clock, not even sure if he feels hunger. Fortunately, he was happy with a sandwich & coffee, then asked if we had any cookies!! This evening I hear him in the kitchen, looking for something sweet....just the sound of it irritates me.
How I'm missing the summer evenings spent on the front porch till after dark. Now we're in lock down by the time it gets dark. Oh well, tonight it's really too cool for that anyway (in July!) Hopefully he'll konk out before too long, & it will be quiet once again. He's not really noisy, pretty quiet as a matter of fact, but so many other little things just get under my skin. I'm scheduled to see the doctor at the end of September,just for my checkup, but if I can't snap out of this funk, I might have to call for an appointment before then.
It's definitely not hormonal - I don't think I have any left anymore! That part of my life is long past - I feel for the younger female caregivers having to deal with all of that along with everything else. I may need a change of medication, as was mentioned, & I really should see about seeing a professional to talk this junk out. Money is a big issue for us, so I'll have to see how that goes.
You're all just great - I appreciate you so much. I might not post a lot, but when I do, I rather tend to go on & on, don't I? :) :) Hugs back to all of you.
Hi Mim--If it's any help, you sound exactly like me! My guess would be caregiver burnout mixed with some depression. I am just now on my last night of blessed Hospice respite, and these five days of a peaceful, pleasant home with nice long baths and plenty of sleep have not only been a godsend, but have just highlighted how crummy my day-to-day life actually is. Frequent difficult toileting and transfers, plus broken sleep every single night, plus being with somebody totally disoriented, and just being so alone and lonely is really taking a toll. I don't mean to whine about myself--I'm just trying to make the point that very few people could do what we AD spouses do, and very few people really understand and "get" what we do. I think the partial answer may be to re-assess your antidepressant with your MD, and as so many have said, do whatever you can to fit in self care. I think some kind of counselor might be useful, too. I do find with the Hospice social worker that I'm afraid to be too negative and needy--don't want her to think I'm the dreaded "bad family member." She is nice to talk to, though, even though I know she's really there for DH, not me. But a private pay counselor (or insurance-billed…whatever you can do) who is just for your own benefit sounds like a good idea. I'm wrestling with my own lack of motivation to get organized and get things done…it just seems like too much trouble…like, so what? I'm just going to wake up tomorrow to another AD day, with the eternal pills and urinals and his not able to understand anything or follow simple directions even with 50 repetitions. As year 14 slowly progresses into year 15, burying myself in books, or cruising the Internet, or watching old TV series on Amazon Prime is probably not productive, but it keeps me sane. I guess it's a different way of anti-depressing.
Mim thank you sincerely for posting where you are at.
I can so relate and really appreciated everyone's comments.
The nurse in me says you might want to get a full checkup and blood work. They can test for adrenal and thyroid function.
If I was a betting woman, I would say caregiver burnout. And no wonder why!
I believe what we all experience as caregiver burnout is certainly not well known or acknowledged in society. My husband has been in a facility now for 2.5 years and my stress about his disease continues. My role is different now however I have probably 10% of the energy I used to have. I have come to believe we get more than burnout with this disease. We are permanently damaged. I should only speak for myself but that is what I feel. I will probably never be the woman I was before dementia.
I was where you are during the winter. More light and being able to be outside has helped some but I am already dreading winter while trying to stay present.
I too see a psychologist at least every two weeks, and weekly when I am really low.
As we say so often here, nobody but us understands what each of us are going through. So glad we can turn to each other.
Just a few responses to a few of the comments - I have bloodwork done every 6 months, having my thyroid function included. I had a radical thyroidectomy in 1996 (thyroid cancer), so I'm checked for thyroid all the time (on Synthroid for years). I'm due again in September. The doctor has me on Vitamin D also (in northeast Ohio, we lack sunshine a lot!!) i'm not sure about the adrenal system - have to ask about it. I made a date for lunch today with my favorite cousin/best friend - will be going in just a little while to Panera's. So looking forward to it. And I did get my camera out last evening & wandered around the back yard, trying different shots, but I still have soooo much to learn. Our backyard isn't very big, so I didn't wander very far! It was pretty at sunset, though, & the birds were singing their little hearts out. As for caregiver burnout, if I'm like this now, how will I EVER get through what is yet to come? Elizabeth, I cannot even begin to imagine 14 years of this! Bless your heart (& everyone else's heart too!) I will keep coming back to this, but I need to put on my "going out to lunch" clothes :) I even put on full make up! I must say, though, I'm beginning to think make up isn't going to help much longer!!!
Mim -- I'm so glad you started this thread. As you can see from the comments, you are certainly not alone and I'll throw my hat into the ring as well. I alternate between having days when I feel that my life really isn't that bad to days when I wonder how much longer I can endure. And my DH is still very functional with his ADL's and is in general good health, so the situation may continue for a long time. My doctor prescribed an anti-depressant for me a few months ago and I really haven't taken it much, but I'm thinking I probably should. At least to cope with the irritability I feel daily and the "Groundhog Day" experiences that seem to promote intense boredom in me.
I am fortunate that my husband is attending a day program five days per week, so I get at least 6 hours of alone time per day. But I have let so many projects go over the last four years that I do at times feel overwhelmed and then kind of stall out instead of tackling a problem head on.
I hope you're enjoying your day out at Panera -- one of my favorite places! Hang in there!
Your whining isn't inconsequential as you said above Mim. It's just as important as what anyone else is going through. Remember how you feel now and felt then and know that the really bad days pass because we're resilient even when we feel the opposite which can help us when we remember that for when the truly bad days come.
That's not cheerleading. It works. When I don't feel like it now that I'm on my own, I don't. I just make coffee, put off what I don't have to do, and get through the day. And a day or two later I'm back to the normal troll life I lead.
Mim, last night I was talking to a fellow wife caregiver of an sick dementia husband, whose husband is in the same home as mine. They had a very similar journey, young husband from diagnosis to completely incapacitated in three years.
I can TALK to her on the phone, really talk! We actually had some laughs about poop and pee trails through the house and falls etc. Later I was thinking , oh my GOD!!, HOW do we get through those years of almost NO sleep, NO help, and only this site for support. Even now, so called friends tell me what a mess I was then, and I can sense they think it was over the top. They will NEVER understand, and our friendship will never be the same.
It is grinding and sad and kind of hopeless and no sleep and no help with house and yard and more and more. It hurts me so much to read here sometimes, that is why I do not post as much. But I feel I owe you a hug and a big confirmation of your pain, just wish there was more I could do.
As for your new camera and your yard, well it makes me think of the little tiny things, the pollen on a flower and the ladybug, and how even in your little yard the possibilities are endless! Have fun with it!
Mim - just know I understand. You are not complaining you are reaching out and that important Rope from Joan's is there for you. I grabbed on many times during our journey and still I need it as lonely days have replaced those you are going through. It is still so hard for me to find anything interesting since there is no one to share with so much like Wolf if I don't feel like it I don't do it. Maybe just one thing a day that you want to do - even a snack! - but something for you. I care and will be thinking of you.
When I was thinking about what to do on Respite, a lot of things that I would have normally enjoyed didn't sound like any fun doing them alone. I did really find Fort Ligonier interesting. I had no idea that such a "middle-of-nowhere" place (sorry, Ligonier, Pennsylvania) played such an important part on the world stage in the French and Indian war. (Seven Years War) I did not mind being alone, because it was just a two-hour drive from home--not too intimidating on the Turnpike-- and I packed a lunch so I didn't have to eat in a restaurant alone--I ate in my car, so nobody gave me weird looks. When I went in, intending to pay, it turned out to be free for military veterans. I told the cashier that I was a veteran but had no documentation, and she said that was OK, just go on in. It made me feel really good, that they respected me as a veteran and I didn't even have to prove it. (I'm a Vietnam-era vet--US Air Force). The fort and the museum were really interesting, with George Washington's pistols probably the highlight of the place. There were all kinds of weapons, personal items, letters, and clothing from the period--English, French, Colonial, Native American, and more--they even had Arthur St. Clair's parlor set up as it used to be in his family's old house. The fort itself had one of the re-enacters there to explain things, (they re-fight a battle every October), and when I briefly (very briefly) mentioned DH being a WWII veteran, and the Hospice situation, he shook my hand and said "God Bless You, and I will make sure we pray for him." So that was such a lovely, warm moment. I guess the point I'm rambling away trying to make is that, even if you think history is boring and I was looney tunes to use my Respite for an old fort circa 1758, it was great to be away from urinals and poop and tub seats for awhile. I would recommend to everyone to figure out something that isn't too uncomfortable to do alone, but that might interest you, and go ahead and do it.
First of all, Elizabeth, Fort Ligonier would definitely interest me! I love history, the stories, not really up on memorizing dates (I do know the War of 1812! :D ) Everyone has been so kind in their responses - thank you so much for your input. It's surprising to me that just a few hours out yesterday, actually talking with an adult human being face to face lifted my spirits so much. I still feel better today, so I'll take it as long as it lasts. I do let things go, way too much & too often.....then I start to feel like a lazy failure. I guess I still think that I should be doing what I always did - NOT! Some days I can just accept that things have changed & so what if something doesn't get done. Other days, it just overwhelms me that things are piling up. I have made a couple of phone calls that needed to be made, one more to go (the lawyer). The house is usually straightened up, but dust is the bane of my existence. Sheesh,it's everywhere, always....can't keep ahead of it (so I guess I stopped trying!) As others have said, some days it's just too much, some days things don't seem quite so bad. I think I'm kind of surprised at the change I've seen in myself already, with having to deal with this stinkin' disease. I remember thinking, naively, when this started that I wasn't going to allow it to take over my life. Again I say, how naive. Also like some others, Dan is still functional as far as dressing, toileting, etc. The personal hygiene not so much, but I've talked about that in the past. He is physically healthy, despite having a heart attack 20 years ago, & being on disability all these years. This seems like it's going to be a really looong "goodbye". Not sure how I feel about that. There is also the ever present financial "woes".....there is no pension, just S.S. It's really tight, but we've made it so far. It's just that I see expenses looming in the future that nobody ever really counts on, & the car isn't going to last forever. Guess I'd just better decide to cross that bridge when I get there. Well, I think I'm kind of rambling here, so I'll just "over & out" for the day. We'll see what tomorrow brings - well, tomorrow!
Just a little update - the past several days have been pretty good ones for me. God works in mysterious ways! :)
I had unexpected company in the form of family from Missouri, my nephew & his mom. I love them so much - it was a really good visit. Dan & I went for an evening stroll in our beautiful park, just started talking with the loveliest younger couple - we walked & talked together for quite a while. I only know their first names, I'll never see them again, but they helped to lift my spirits even more. There are still nice, considerate younger folks out there! Today, my step daughter & her husband stopped over with an Edible Arrangement for our 48th wedding anniversary (the 23rd). It was such a nice visit. And - my lunch with my cousin went so well! Even got in a little shopping :) !
All in all, I'm basking in the good times for now. I know things can turn on a dime, but trying to stay in the moment.
Mim, this sounds so much like me! I am so burnt out. I am just tired. I really don't know how much longer I can do this. Also, don't know if I can ever go through with placing my husband in a nursing home. I don't know how others deal with what they do. I thought I was a strong woman, but this is kicking my but. I also thought I was very spiritual, but I feel defeated.sometimes I feel like God has forgotten me. I pray my husband won't have to go through the last stage, I don't think I can handle it!i so hope you can get some respite, I have someone coming tomorrow for a few hours. I think that os the key, I know I have more energy when I get out of this house and this madness!
Dear Ky caregiver - God has not forgotten you. I completely understand how you must feel at this time and I'll remember you in my prayers. I hope you take some time for yourself - maybe just a quiet cup of tea (or coffee or whatever!) in the corner of a restaurant even if not for long but something just for you. You are so important in all this and your feelings do matter!! I was not faced with placing my dh so can't address that but I can remember the dread everyday brought with no rest and no hope for improvement until the end for him. No happy ending but I've found life goes on - just very different. (( hugs ))