You don’t get it unless you get it... Anyone else feel this way?

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You don’t get it unless you get it... Anyone else feel this way?

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In my experience of sharing my caregiving experiences with others, I have found that they don’t understand unless they have been a dementia caregiver themselves. One time someone kept asking when I was able to hang out and go to a movie or something and they said, “Can’t you see if your schedule can be adjusted so you can take a day off?” Dementia does not take a day off, therefore I cannot take day off. I rarely get the opportunity to do anything for myself or do anything I want to do. My life is on hold and some people just don’t understand how it is. However, I am very grateful to have a few close friends who have been dementia caregivers for a loved one, so they can relate and they understand.

Does anyone else feel this way? Like you don’t get it unless you know?

Alzheimer's & Dementia Family Caregiver Sacrifice

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Well, not with dementia because my mom has Parkinson’s but yes, no matter what the situation is unless people have experienced it they simply don’t understand, plus everyone has individual circumstances that make things difficult for us personally.

They say stupid crap like, “You are so blessed to have your mom for this long. Love her while she is with you.” It’s not about love. Caregiving is a burden so yes you make a very valid point!

My caregiving days are over and I feel so much relief. I just couldn’t do anymore. 15 years was long enough!

Take care.

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Yes..no one can understand that even with some “time off” your mind is thinking of the person we take care of....there is NEVER any real time off...I dream of when this job ends...love my mom but I am exhausted..

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YES!! I long ago came to the conclusion that unless someone has dealt with a person with dementia, they are totally clueless on the entire situation. I can also tell, when talking to someone about it, there is a difference in how they will say the word "awful" and how someone else that has no clue says the word "awful". As in "It's an awful disease!" Something as simple as using one word tells me they either know or don't know what it is like.

To be fair, however, I have friends who had LO's with one of the dementias, before my pre-dementia caretaking time and I had no clue. It's one of those things the vast majority have to experience to understand.

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You hit the nail on the head! I too had no clue until I too had lived as a caregiver with dementia. I think the best thing we can do is to know who our "go to friends" are (as I call them). Ignore the ones who don't have empathy or at the very least try to educate them in a nice way. I made a list of the friends I can talk to who understand and will listen. The ones who don't, I don't bother.

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The only explaination that ever seemed to get the message across was when I asked my friend in exchange...would you just take a day off and leave your two year old home alone?
only....my Dad is big enough to make real trouble, and tear the house apart. Elderly dementia victims are far worse than the terrible twos.

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Great answer to your friend! Love that!

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I hope I will not offend ANYONE by saying that very few people come here with many “dementia basics”.

Even the very well intentioned questions that begin “....how can I explain.....how can I make my LO understand.......what should I say.......how do you talk.....doesn’t understand......why can!t my LO realize that.....” indicate that the caregiver will sooner or later need to confront the fact that by the time you have realized that your LO is behaving differently, using language to inform or persuade, or trying to, is in the process of becoming lost.

I think that’s one of the baseline concepts that non-caregivers have difficulty embracing until they’re themselves enmeshed in the responsibility.

Once you’ve come to that awful realization, you’re in a more informed place to actually deal.

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And you then suggest...
Why not stop and get some donuts and coffee and come over here and we can chat.
You call a friend and say..."I could use some company tomorrow I will make lunch would you like to stop at the Library and pick up a movie, I trust you to pick a good one"

You are right people don't know exactly what it is like until they are caring for someone. Probably much the same way it is with young couples when the first in the group has a baby...life changes dramatically.

Now some advice for you. You need to have a caregiver come in at least 1 day a week so you can get out. (if not 1 day a week 2 times a month would be better than none) You can meet with friends, go to a movie, go shopping, care for yourself. This is just as important as caring for your loved one. "We" can not do this all ourselves 24/7/365 we need help,we need a break, we need to ask for and accept help when it is offered.

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Good and very thoughtful advice 💗.

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I have the ultimate respect for dementia caregivers. My FIL took care of MIL for 4 years on his own. It was an eye opening and unique experience that I don’t think you know about until you go through it. Make sure you take care of yourself. God Bless

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O yes, the feeling is real and we are only 'new' to this, until this past December we were just fill in as it were. Now full timers there is not even enough time to even clean my home. Caring for someone is not a part-time deal, not even at night. We even have bought a baby monitor to help with the night time falls or the freaking out moments. Nothing like waking up to your loved one screaming because they have no idea were their husband is or what not. It is as if life just passing by while we are on hold and repeat. Unless experienced they don't have a clue.

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It truly is life changing that no one is prepared for. I love your honest response. Take care.

(9)

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People are SO SO STUPID and cruel. And you have my condolences XO

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I have been my husbands sole caregiver. He has two brothers, one of whom kinda gets it and has visited, called and helped me out when we had to prep our home for sale. The other is a lost lad on his own island. He also has two sisters. They each live in another state. Recently, I wanted to share with them that their brother was in the hospital. Well! The one sister begged me to let the doctors decide what was best and that the reason he "wasnt doing so well" was because i supposedly took him off a med without talking with his doctor! (Untrue). She also sent him a box of teabags in the past that were supposed to be good for memory. The other sister (who he has always been distant from) shared her sad story of losing her beloved cat because she did nothing and implored me to get her brother help so she didn't lose him too! Meanwhile, back at the hospital 24hours each of the 6 days he was in, I was at his side. All their comments were on messenger. No one called me. They took it upon themselves to make cruel accusations and attack me from afar after not even seeing him for more than 2 years. The whole family feels he was misdiagnosed and that some wonder drug would have helped but for some unknown reason I withheld it!! Yeah, like caring for my 58 y/o husband in this condition who will be taken from me way too soon is preferable to getting back the "other" man I love. Yes, they don't and never will get it. We who are here do though, and I am greatful to be able to vent with kindred souls.

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Oh my! If only a few cups of tea from those magical tea bags would do the trick! Sorry you are dealing with that level of denial, or cluelessness, from the inlaws.

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My life was on hold for a real long time and I hate to say it it really messed me up some. It has taken me over a year to even think about being a functional person of society. I warn others about isolating oneself too long as basically the only caregiver. The flip part is is that I know the experience of being a full time 24-27 caregiver to my mom has created an endurance, patience, and courage in me like never before.

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It definitely changes you. I hope all of us survivors can find peace at some point even if we are never the same anymore.

(11)

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Call me naive but I really didn't understand Dementia/Alzheimer's until I became the caregiver for my mother. I thought that it was just forgetfulness and a little agitation because of the forgetfulness. Never in my wildest dreams did I realize that there would also be aggressiveness, hallucinations, delusions, exit seeking, incontinence, stubborness and to top it off requiring 24/7 care . I think a part of the reason people are so naive about Dementia/Alzheimer's is no one wants to discuss it unless they are affected by it, because there is a misconception that the person with the disease must be crazy. If you tell someone that your LO has cancer you immediately hear I am so sorry to hear that but if you tell them your LO has dementia they are at a loss for words. The sad thing is dementia is always a terminal disease and cancer does not have to be. There needs to be much more public discussion about dementia

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Gracie, I agree. My godmother had ALZ. Her behavior was so confusing to me when I would visit her in the nursing home. We do need more education on the topic.

(4)

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Sometimes I think I have become the most boring person on the planet. But it turns out that when I don't talk about my mom, my friends ask me why I'm not sharing my great stories any longer. They are actually interested in her adventures into the land of make believe and confusion. And I know they care about my well being too, but you are correct, they cannot understand unless they've done the hands on care giving day after day after week after month after year.

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The land of make believe!! So we'll said. Had my training with my Mom 12 years ago and now with my husband. Land of make believe describes it well. If that's his world for any period of time, I am in there with him too.

(7)

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Yes, I definitely get it, I wrote this poem, I think you will be able to relate,

UNTIL YOU LIVE IT by Diana Ballinger

Until you live it
You cannot know
The breaking of my heart
I am trying not to show

Until you live it
Don’t judge or give your take
For I am barely holding it together
But doing it for his sake

Until you live it
Just quietly listen or hold my hand
For the hourglass that was our life
Is quickly running out of sand

Until you live it
Watch him change with everyday
Trying to hold onto something
Forgetting how to pray

Until you live it
Which I hope you never do
Know I do the best I can
And face each day anew

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That makes me cry.

(7)

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Goodbird, you are singing to the choir! I had no idea what it would be like until I started to deal with my father's diminished capacity. Now it seems my mother is joining the ranks of the "less than usual" cognitive abilities. I keep thinking I'll be able to have a cogent conversation, but it usually goes out the window. I haven't been out with a friend without my parents in what feels like years. I have a home in another state that I haven't been to for 18 months or more. Everything I do revolves around them and I'm running out of topics for conversation when I do get to talk to my few remaining friends. You don't get it unless you know!

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Hello,

Yes it’s very true what you said about how everything you do revolves around the caregiving. For me, and probably you too, even something as simple as going to the grocery store. Sometimes grandma gets mad and doesn’t want to go in and I have to convince her it’s okay, tell her I need help shopping, and of course offer to buy her a snack. The snack offer usually works 😂

(4)

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GoodBird I know exactly what you are talking about. When a Carer takes the roll of Caregiver to a Family member it is hands on, 24/7 X 365 from day one. The Person Who you are Caring for is completely dependent on you, and trust you with their Life. Outside the walls of your garden the World doesn't exist any more. As for attending cinema, meet up with Friends, head off to the Bar for a drink is all but a faded memory. You get up out of bed every morning and feel jaded, whacked, exhausted because you have been up attending to your loved one during the night as well. If you manage to get a few hours sleep in, you learn as a Carer to sleep with one eye open and silently you cry out "God will I ever get my Life back to where it used to be ? Being a Carer to an Elder Who suffers from dementia or alzheimer's consumes you but you do it out of pure love, knowing that this beautiful Person Who you Care for, would have Cared for you had circumstances been reversed.

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I’m in the same boat, my life is on hold bc I’m my mom’s full time caregiver. I don’t regret it but just once in a while I wish I can get a break, like dinner with my friends & have a conversation with ppl my own age or just get dressed up to go see a band at a bar, it’s been so long.
my friends, ex-coworkers and even family members don’t understand it at all, they think just hire a pt caregiver once in a while and just go out...for me it doesn’t work that way, if that person does not pay close attention for a second my mom can choke or fall and get injured making the whole situation 10x worse, so I don’t take a chance. I put my career on hold as well, and I know the consequences of that too, it’s hurting my chances of finding a job in the future bc of a work gap on my resume plus I’m not being paid now do not contributing to taxes, SS, etc.

You are a very special Granddaughter, going to college too and taking care of your Grandma is an amazing ability...you will be rewarding in your future. Good luck!

(10)

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Yes, I understand, though on a different level. My adult son has a hypoxic brain injury. He lives with us and always will, he’s a complex person and that’s the biggest understatement ever. He’s a combination of fun, mean, incredibly challenging, kind, selfish, and too many other things to name. We have good friends and family that have known him throughout his complicated life, and we learned years ago that though they’re somewhat interested in him, no one really wants to hear or know the details of what life is really like with him. If we get into any detail, people tune out, and so we don’t go there. And yes, his difficulties don’t take a day off. The only ones who understand are parents who’ve lived it also. I’ve accepted the reality of it, doesn’t mean it’s not hard sometimes or doesn’t quietly hurt.

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I totally understand how you feel. It seems one of my friends who is very wealthy seems to have all the answers to caring for my mom and father in law. Especially when it comes to my mom. Many of you know my situation. First she has four siblings one who is at her moms everyday. Her mom is in great health so there’s that. Secondly, she has the money to just hire someone. Yes, my mom has the farm but she is not at the point she really needs assisted living but she is finally willing to hire others for cleaning and some daily care. But she is still my mom and I only have one. Hang in there

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Isn't that true with everything in life?

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I think I understand a little. That person you're trying to help isn't quite exactly there anymore, but there is the tendency to want to interact with that person we know and care for. Sometimes there's a flash or a sliver, but it doesn't last. The nature of the condition means that we're adjusting a little every day to chase that person and to find that new equilibrium. Of course, every adjustment asks a little more of us. It's tough, and relationships with others are proofed and tested. The fairer weather friends and family express distaste and judgement, and eventually find something else to do with themselves, and we feel a little more isolated and a little more in the wilderness. Let's face it: it's outside of many people's experience, and it's not a celebrated part of our culture like a birthday, marriage, et cetera.

I'm on my second "tour of duty", and yes, I'm still suffering from the first one to some extent. From my first, I know that, though it's a grim thing to contemplate, these things do have a start, a middle and an end. That realization gives me a little bit of direction and helps me to moderate my expectations as the process unfolds, and I can see when the time is coming for this or that, to have a sense of acceptance of when I feel it's time to do more of one thing and when it's time to step back from another. It's still tough, but having a context and a perspective to put things into I find reduces the feelings of suffering.

I hope that helps a little.

doubleword.

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My road is a single lane. I could not even think about what would become of whats left of me if I had to travel the two lane road you travel. Bless your heart and mind.

(1)

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No one can fully understand UNLESS you've been a caregiver to a dementia patient.

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I wanted to add that that person who thought it seemingly easy for you to "just take a day off" must have never ever been a caregiver. Good grief!

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Hello,

You are absolutely correct. This person was completely clueless. If it were that easy to just “take a day off” I would be doing it from time to time and would probably have a lot less stress. It annoyed me a lot when they said that, trying to guilt trip me. They thought they knew how it is because they said their grandfather was starting to get it, but that is not the same as being the one taking care of the dementia patient. Not even close. Yes, it is hard for anyone to see their loved one decline cognitively, but it’s a whole other level when you see it day to day.

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I know the feeling and it can be a lonely one. I am in my late 30's and I don't have any friends that are going through this with their parents yet. Am happy to hear that you have a few people that get it! The worst part is when someone acts like they understand and have helpful info or advice, and it turns out to be more self serving nonsense. Best of luck to you! As you said, nobody really gets it until they go through it, but thank God for groups like these.

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Hell to the yeah! It is SOMETHING nobody can remotely understand unless they've done it. It changes you in ways you never saw coming. It is mentally taxing AND MENTALLY EXHAUSTING. I forgot that I used to be fun and a go getter. After 3 years without a day off or a vacation...7 days a week...24 hours a day it caused me to just withdraw from life. Dementia is a God awful disease and the caregivers in the WORLD we do it because it is the greatest gift we can give to a loved one. I lost my desire for everything. It sucks the life out of you. Having to rebuild from ground zero is a nightmare. Life is what we do for others! It's not about us. You get what you give!

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Hello,

Awww I’m sorry you’re struggling too. It is mentally and emotionally exhausting. Sometimes I don’t even feel like doing my hobbies because I’m so exhausted. Drawing is one of the things I love and listening to classic rock. So whenever I do feel like working on my drawings, I put on my music while drawing and just escape for a little while where I only focus on my drawing and music. It definitely helps me.

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You obviously touched a nerve with many caregivers. Many of us feel the same. People think they are offering support by telling us what good people we are for what we are doing, and then they go about living their own lives, telling us why they can't help. I don't buy into that anymore. We do it because our loved one needs us, not because we are angels or because there is a place for us in heaven. We do it because it is the right thing to do. Just because they close their eyes doesn't mean it isn't happening. Caregiving for someone with dementia takes a toll on the caregiver, on relationships, and often our own financial well being. You are not alone in this. We all feel your pain. Thank God for sites like this where we can share and find support. Here's to all of us for giving up a part of ourselves to take this on when so many others can walk away. In the end, we will know that we didn't turn our backs. There but for the grace of God go us.

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You don’t get it unless you get it... Anyone else feel this way?

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