Why is dementia so painful to family?

Amy Grace hit the nail on the head! I too, bring out the worst in my mother. Thinking I was helping her, I was really just antagonizing her all the times I went to clean or help her.

She's peachy sweet to my SIL and some others, but with me, I never know who I am going to encounter. She tossed me out on my ear last November and told me to never come back. I have seen her twice since then, both times with others present and she's ignored me.

At first it really, hurt. Now I don't care. I text my brother now & then to see if she's OK, but if she never saw me again, she'd be fine.

Dementia robs us of the person we used to know. The way I look at it is, my "mother" is gone and this person is riding around in her body. Sometimes the sorta nice mom peeks through, but not that often, and not with me. Accept what it is, and know they don't mean the hurtful things they say.

You can't blame grandpa for having bad days. Even without the dementia his life is a pale imitation of what it once was, he has lost most of his family, his friends and his independence. As much as he is loved by you and cared for in AL it can not replace the losses that come with old age.
What you can do is find ways to cope. When he starts one of his rants you don't have to listen to it, tell him you will talk to him/come back to see him when he is feeling better, then hang up the phone or leave. When you do visit or call have some topics in mind that might distract him... check out a photo album together, ask about his childhood or work or hobbies. Lots of old people feel like their old age is less than golden, don't take it personally.

I think dementia is so painful to the family because of all the losses. It's not just the person who has the dementia who suffers loss. I think the family/ caregiver suffers just as much loss AND is aware of that loss in a way the person with dementia often is not. Certainly the elderly loose their abilities, and the vitality and the people in their life. But that is fairly predictable, as none of us will live forever. We all get old. But the caregivers often find their lives totally subsumed the demands of this other person. It starts as they lose the loved one they once knew, as that person slowly deteriorates into someone unrecognizable. (Usually becoming not just needy, but often selfish, inconsiderate, self centered, demanding, unreasonable, ungrateful. Often rude, unkempt and unpleasant to be around.) And this is the person who is now the center of your life. YOU are no longer ever first on your list of priorities. Your needs go unmet; often not even considered. Worse, your spouse, and your children are often relegated to equally low priority. You have to miss your kid's school events, and your spouse starts to look elsewhere. Your pleasures, and joys of all types, are eliminated. No time for TV, exercise, books, classes etc. Your days are now filled with unpleasant, thankless work. You are ordered around, belittled, and constantly the target of efforts to make you feel guilty for not doing even more. Even your performance at your job suffers, and often your find you have to give up your job to take care of this person. So your whole family suffers financially. Meanwhile, for most caregivers, there are the other members of the patient's family who are doing nothing! Or next to nothing. Leaving you to deal with it all. For you to make all the sacrifices, and do all the work. These are brothers and sisters who you have always loved. And they dump this on you?! You wonder how could they do this to me? . And you resent it.... So you start to hate it. HATE it all. You lose your temper, and find that now you have not only lost the parent (or spouse) you knew, you've lost most of the joys of life. You are now even losing yourself. You've totally lost your identity. You've become an angry, resentful, drudge with nothing in your life, watching the rest of the world go on without you. ........Yes, I'll say it's beyond painful.

NY2015, sorry you have had a bad experience with AL. But, not all AL and NH are like that. This was a very cruel thing to say to many who are not able to care for their loved ones have no other choice. You have no personal experiences with anyone on this site or their facilities. Please be more considerate. Don't speak in generalities to those of whom you have no knowledge of their situations.

Good advice from cwillie & Pam. The frustration of growing old, losing the good things of the past, losing loved ones compounded with dementia brings this about. And the ones closest to the senior are the ones who are blamed and treated badly.
We went through the same with Mom for years. She took it out on my sister and me with her complaints, but we found out she was pretty happy when we weren't there.
When your grandfather starts his complaints, especially blaming you, just tell him you understand it is difficult to get older and for him to adjust to changes in his life: Be firm: tell him you will not stay and listen to his negativity and rants. If he won't stop leave, or hang up the phone. Several times we warned Mom to stop the arguments and complaining that turned into a "who's on first" roundabout, we would leave - and then we left.
At first I felt guilty doing that, but with her dementia, I realized she didn't remember after ten minutes or so. That is how we saved ourselves from bad headaches and stomach cramps every visit when she set her negativity trap.
Just remember: you have nothing to feel guilty about, so don't let it get to you. Its very sad this happens to them, they can't help it. It is so painful to lose their independence.

All of the above comments are so true...my dad passed away sept 2015 (age almost 98), and oh how I would love one more good or bad comment from him....one more time to hug him...each time he had a bad time i would tell myself ...wow, how he ha always loved me and this is only a short period in our relationship and i can handle this..yes, change the subject, yes walk away or politely hang up...just love them..THey need to be heard and feel important...find old pictures and get them to talk about it..talk about the times they felt tops in their life..and give eye contact as my dad thought that meant you valued what he said.
Ask their opinions about something (color of paint, where to moved a piece of furniture,...) Like a child that grows up so fast, this time seems slow, but it will end and you will wonder why you complained...keep loving them as you would want to be loved...

He is mad about being OLD. You tell him he is wrong, you kiss his cheek and you leave. Don't stay there when he is nasty. Get up and GO.

My mother in law is in memory care as all members of my husbands family live out of state and She didn't want to move. She is so content and happy there. She has been there for about two years and is really doing well. I don't think she'd be happier anywhere else . They provide social activities etc and she seems to enjoy being there. We take turns visiting as family and she has friends constantly in and out . It has been a positive experience for her and us. We feel blessed!

My prayers are with you all. It's very hard to watch and deal with this illness any illness of one of your loved ones. I'd pray, cried and sometimes wanted to throw my hands up, when I was taking care of my mother with dementia, but the difference was she was always a kind and gentle type of person. It's the Illness we all hate, the person with the illness is the victim. It's hard to watch as they get weaker and more confused, but please get outside help for not only them but for you the caretaker also. It's been a year since the loss of my mother, missing her a lot, but knowing she is in a better place. So ask God for more strength and will power to help those we love.

Chiming in late here. I actually read this entire thread and was absolutely flabbergasted by some of the negative comments, but some posters sound a lot like my family.

As caregivers we're often blamed or judged for decisions we've made by someone who hasn't walked in our shoes. IT'S OKAY! Just know that each one of us is doing the absolute best we can with what we have to work with.

My hat goes off to those that are able to care for their loved ones in their home either out of sheer love and patience or necessity. I know first hand how expensive facilities can be, and some people aren't blessed with the resources to be able to place their loved ones in a facility that is better equipped to handle their needs and have to face the increased stress that comes with having a loved one in a home that could be dangerous.

For those of us that have chosen a facility, most of us would agree that it wasn't a decision that was entered into lightly. In fact, for some of us, placing our loved ones with people that are trained to handle advanced medical issues, away from household dangers (like unlocked doors, stairs, or appliances that could harm a person with compromised cognition) was the most loving decision we could have made, and it happened to IMPROVE the relationship with the loved one.

So... it sounds like some posters are still dealing with the pain of losing a loved one in a facility and their only recourse so early in their grief process is anger. I get it.

In addition, they may be dealing with the guilt of facing that they were the ones that put their loved one in the facility where they died and haven't determined that it isn't their fault.

Hurting people hurt people and we only give them power by responding. That is all.

This forum is a Godsend and I appreciate all of the love and support I get from you all!!!