A couple of years ago, on the front of a calendar, I saw the phrase "Pretending to be a normal person day after day is totally exhausting." That phrase went right into my book of quotes.
I've heard a lot about how, especially in the early stages, our loved ones try really hard to seem normal when they are around other people, and how exhausting it is for them. I remember one time that after a nice family visit, DH didn't speak for about two days because he was so depleted from trying to interact and seem like his old self.
Now I'm finding that more and more, it's hard for me to appear normal. And the attempt to appear normal feels exhausting. Being so immersed in this situation, with no end in sight, it's like I have no common meeting ground with other people. I don't want to talk just about our situation, but a lot of the things that people converse about are not in our lives any longer. Also, never talking about what's really happening seems like going around with your head on fire and trying not to bother people with your little problem. Sometimes when people tell me their troubles, I want to say "Seriously? You really think that's a big problem?"
Oh, this makes no sense. But does anyone else feel like it's getting harder and harder to appear normal? Or is it just that I'm feeling less and less like even trying to make the effort?
It makes perfect sense. Boy, do I remember those days. And, two and three-quarters years after his death, I am still working on what is the new "normal" for me. At least now it is fun to try to figure it out. Hang in there, Jan, there is definitely life after Alzheimers!
Normal people can't tell what's beyond normal thinking unless they are pushed there. In fairness, we wouldn't have been able to either if it wasn't us that have this terrible disease come into our lives and take over.
We all equally share the state of the things we are concerned about right now. That's fair too. it's the mark of reality that we notice we have been pushed to somewhere else. Our spouse feels that far more than anyone else for a long time as you said. We're not far behind them though, because even though it's not our own brains that are breaking down - the 'normal' world around us does break down because of the extent of push our abnormal situation forces upon us.
Our efforts to keep going in a normal way increasingly have to jump wider chasms as the extent of the seriousness and domination of the disease increases in our lives.
"...never talking about what's really happening seems like going around with your head on fire and trying not to bother people with your little problem. Sometimes when people tell me their troubles, I want to say "Seriously? You really think that's a big problem?" "
You said everything right there. That's the truth. You can't talk about the elephant which isn't in the normal world without destroying every semblance of normal conversation. And you can't go and enjoy visiting normal conversation with the elephant on top of you.
Try and understand that it's not you and it's not them - it's the situation you are in. Anything you can do to help yourself understand that or help yourself in that is allowed. That's more than I was able to do but maybe others can.
Normal want is normal. I am living with one foot in the real world and one foot in the dementia world. The real world is going well but I am different than I was I have a vision of how I want everything to be but I am unsure how it will turn out. There seems to be so many obsticals to overcome, it is right there I can see it but I am worried I will screw if up. We still have a long way to go in the dementia world and who knows how long that one foot will still be there. I am loosing her, yesterday during our visit she asked about her husband then after about an hour she just got up and walked away. At some point I think the visits won't mean much to her how will I handle that?
I am nervous and aprehensive about it all That was never me now I guess it is.
You're right, Jan. It was hard to try to act as if things were fine when I was really stressed, exhausted, depressed, and frightened, often all at the same time. What really made it difficult was I felt I had to appear cheerful when I visited my husband in LTC. After he died, some of the negative emotions slipped away (although I still have not achieved normalcy). At the same time, I stopped feeling I had to plaster a smile on my face. So my appearance is closer to reality now.
It was exhausting for my hb to be normal. At least at day care he doesn't have to be. I also see him less and less trying to be normal when chatting with people.
I think that is my problem when I think about it. I am tired of trying to be normal around people. My remedy - avoid people. I am less inclined to walk and chat with people. When I do, even with those that I have developed a friendship with, I can't wait to get away. I would just as soon sit by myself with my computer and TV. I am the type, and always have been, that when chatting with people works hard to keep focused on them, not me. Now I have no desire or maybe energy to even do that. I know - a perfect description of depression. So what!
I bought some beer, epsom salts and blue mouthwash today to make a concoction that is suppose to kill or keep those nasty little nats that are biting us and Jasmine. Two others in the park used it on their grass and said it worked great. I don't have a hose sprayer so will use the spray bottle - slower and more work but hopefully will get the job done.
Don't even try to be normal, Jan. There is nothing "normal" about dementia or your situation. Just be the "you" that you are at any given moment and if people can't accept that, then good riddance to them. The "trying"to appear normal will take just as much from you as it does from your husband. There are a so many here that understand what you are going through so I hope that gives you some comfort.
I found that I just sort of kept to myself more & more. I got tired of trying to act normal, took too much of my energy & don't have much of that in the first place! I am quite contented to be home (most of the time), reading, playing on the computer, sleeping (!), what I call putzing around the house. If it EVER gets warm enough to enjoy my front porch, I will spend time out there.
My normal is NOT everyone's else's normal & I'm okay with that. I'm old enough now to just not care if anyone else likes it or not.
Dan used to try so hard to act normal around others, but he doesn't seem interested in that now, or more likely he just isn't able. Went to see him today & he just laid on his bed sleeping, waking once to go to the bathroom, when he came back asked me if this was his bed & just laid back down to sleep. Either it's the advancement of the AD, or the cancer is beginning to affect how he's feeling...we simply don't know. I just realized a couple of days ago that my husband is dying...never said those words before.
This is so timely for me. I just cannot fit into the world anymore - and don't want to. Even Alz spouses that I know personally want to share their journeys with me and I simply cannot. I don't have any emotional energy left. I dread going to see my DH at his facility because most of the other residents in his unit are new and it is very chaotic & challenging. It's not the comfortable "other home" for me anymore. My DH does not recognize me very often and just eats & walks. It's all I can do to remain positive and friendly while I'm there. I don't have any emotional energy for anyone else. I feel very bad about this but just cannot stand this anymore. My usual remedy would be to put the dog in the car and drive to see my kids for a few days, but I just got back from that visit. Thank the Good Lord that it's gardening season or I'd be curled up in my bed eating cookies, drinking wine & taking a sleeping pill at day's end. I don't know if this is depression or just exhaustion from 10 years of dealing with this disease & 4 years of his placement in a facility. I'm just done. My new normal is to be short tempered, cranky, and a recluse. Thankfully, my family and friends are very sympathetic, caring, and patient with me. It's just me that can't stand me!! Sigh!
This is my first time posting, I usually just read, but this thread really caught my attention on "normal". Outside of the AD world...is there really normalcy anymore? What is normal for 2017 or any year for that matter? Sometimes I think my AD world with DH is a whole lot saner than some of the issue/crisis that people face today, granted DH is between stage 3 and 4 but we have been dealing with this since like 2004 or 2005 and has been on aricept throughout. So family and friends pretty much know what is going on...just in the last year or two things have progressed downward a tiny bit...so doc upgraded from 5 mg to 10mg. I just be myself and DH does the same...there are crazy days when I want to pull my hair out or cry and there are days filled with so much laughter and fun but i am pretty sure there would be days like that even if DH didnt have AD. But I also think that if you are human there will always be dysfunction in your life at some point or another. It is how we deal with it that matters...I try to turn my craziness over to God...he is my only normal! I know we still have a long road ahead...but we just take one day at a time....
Been thinking about normal. Deciding there is no normal.
My church has what is called “joys and sorrows” where we drop a stone and share a piece of our lives if we choose. This time is part of each Sunday morning worship. Things like the following have been shared since my partner and I joined:
A daughter killed by a garbage truck while she was riding her bike. The parents and the sister continue to grieve. I see it in their eyes.
A nephew on drugs, stealing from his parents. This child used to be a little one filled with joy and laughter.
A son who has made great strides in recovery from drug abuse, but is still very fragile.
A new diagnosis of cancer when the first was considered cured.
A job lost.
An eviction of someone who is 70 years old.
We all hurt grievously at times. This is not a sermon. This is the truth.
What I think happens to us is that our reserves run low. We lose the strength to do more than just fight the battle at hand. Reaching out to help others really can demand more than we possess at a given moment. Up to now I feel I have had the reserves to interact with and support others as they were supporting me. Now less so. There are days when I barely have what it takes to do what I need to do.
Welcome tnwlk43. Will try to figure out why you choose that name - a way to challenge myself: from TN, like Tenn walkers and were born in 1943. Am I close?
I am content to play computer games, half listen to TV and can't read anymore of those articles on AD whether research or how to be a better caregiver. The last thing I want to read is how to entertain you loved one with dementia. I have tried various things but none work. He is getting to where he doesn't want to watch TV for long either. Seems the only things that make him happy are going to day care and car rides. Car rides: where to go, hate driving, and cost money for gas. I sound like loads of fun don't I?
Charlotte you were really close..I do live in TN, i use to breed and raise TnWalkers now I just have 6 pasture ornaments who are my saving grace at times...43 actually was the age that i started using that id on the internet, I am now 61, DH will be 68 on the 16th of June. We live on a 17 acre farm, raise chickens, meat rabbits, have 6 horses and 4 GP. We garden and I can almost all of our garden and make jams and can meat, I work part time(DH and I are both retired) but DH is going to start working with me so i can keep an eye out....the company that I work for is awesome and they are helping me out. His job will be a one task job so he wont have to do multitasking. We just try to stay busy for as long as we can. I am moderator of our ladies group at church...we have a new life study that started yesterday called Simplify by Bill Hybels...and it teaches us how to not to let our bucket deplete and how to replenish our buckets when they get low. I think we all get depleted of our reserves at one point in time, even if we arent dealing with a fatal brain disease. Each has their own issues, some of them are just harder or worse than others. I am glad this board is here and thank you to everyone who puts forth the effort to share even when you feel all is lost.
I also hope I didnt offend anyone when I mentioned God...I hope that even if religion is not your thing that you do have some type of higher power to help you through the troubling times.
Freedom of worship is enshrined in our rights. No one should feel the need to explain. There are over fifty flavors of belief in God in north america alone where Baptist, Mormon, Lutheran, and United are four better known examples. Our freedom of worship is one thing that we have not lost during these very restrictive times. Perhaps the knowledge of that might help us; definitely the defense of that freedom is worth speaking up about.
You cannot offend anyone by speaking through your heart with your beliefs. It would be great if that applied to other things like politics - but that's a different topic. In the meantime, when so many things are not normal, it's a comfort when our beliefs are.
Lindylou, you certainly hit the nail on the head for me. My reserves have run so low that I don't have anything left for anyone else but my husband. Thanks for clarifying it for me. Now I don't feel guilty for how I feel.