Why is dementia so painful to family?

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.

It is very painful because the person you knew and loved is no longer around. The disease has eaten away that beloved one. We see the shell and sometimes mistakenly fall back to expecting mom or dad is still with you. They are not. If we think of them as patients it becomes easier. Our expectations change. Perhaps it is a process as is the disease. As they change, so must we.
A great challenge;a painful one;but a realistic one.

Doingbestican you stated so well how I feel every day. And the worst part is knowing there is nothing i can do to change things

The best way I've heard dementia explained is that their mind is tormented.
Imagine for a minute that someone is telling you " at a ripe old age", you don't see what you see, hear what you hear, or know what you know. In their mind everything is crystal clear. That person you say is their son is way to old to be their little boy. No way is that 75 year old man their husband. She can't be my great granddaughters. Your son isn't old enough to have children.
They see what they see, hear, ect.
AND !!!
YOU CAN'T MAKE THEM SEE IT ANY OTHER WAY!!! In dealing with my Mother and now my Mother-in-law, I find it best to just agree. Then an hour from now we can do it all again.

Seeing someone you love friend or family suffer is heartbreaking...

You just have to support them to the best of your ability..

NY2015 - you are way off base to generalize and rant like this. I am in the healthcare field and work with multiple AL centers who are fabulous and caring places to live. Not everyone is in a position to take care of someone full time in their home nor should they. You are not dumping someone when you make the right decisions for the right reasons. Sounds to me like you have a lot of built up guilt. Try in the future not to let it get out of control and give people the wrong ideas. Fear-mongering is never good.
GRANDAUGHTER74 - You can't stop his behaviors and it will only be as painful as you let it be - and I am not trying to sound harsh. Dementia is not pleasant and can be difficult for so many. Remember - you have no control over his cognitive state no matter what you say or do. If you know that you have put him in a good place where he gets good care than you can rest easy. You can not, and should not, let your life or peace of mind be run by something you have no control over. Be as patient as you can and do not get caught up in trying to explain yourself over and over and over again, It will not help and he will continue to have both good and not so good days. Ask the staff how he is doing when you are not there. That is a big indicator of his anxiety level and whether or not he may need additional interventions. If he does fine when you are gone than all is well.
How long has he been there? There is a period of adjustment that may take some longer than others to settle in. In time the staff ahould become partof his daily routine and people he will come to count on. When he gets aggitated tell him you love him, that you know he is doing well and that you need to leave.
He will be less aggitated and you will not be caught up in feeling guilty .

You can do nothing. Nothing but take care of yourself and stay connected to compassion for yourself and him..
de·men·tia
dəˈmen(t)SH(ē)ə/
nounMEDICINE
a chronic or persistent disorder of the mental processes caused by brain disease or injury and marked by memory disorders, personality changes, and impaired reasoning.

DoingbestIcan
Thank you for explaining exactly how my life has been for 7 years.

Doingbestican you made a bullseye!!!

I am now going on 3 years living w/my soon to be 90 yr. old Mother. All previous answers are hitting nails on the head left & right. Cruel as it may seem, you need to not care what Grandpa is saying or feeling in his unhappy words to you. It's apparent you do love him, or it wouldn't matter what he said or thought. BUT my experience has been that if you give him as much love as he allows when your w/him, usually you've done all you can. I give my Mom, many have told me, the ultimate care & I am "special" because of the "sacrifice" I am making on her behalf. I honestly believe it would not matter if she was in her own home, which she is, or in a very expensive facility. She is sometimes very content & sometimes bitter & mean in her comments. I used to cry & hurt, & she even kicked me out of her house. Then later begged me to come back. I didn't understand the personality roller coaster is one of dementia's demons. Now that I understand, I know IT DOES NOT MATTER HOW HARD YOU TRY it's never enough. So I have to be content w/I am doing the best I can, & be happy w/those happy moments & totally have an "Oh well" attitude when things get bad. I also have had friends who work in the adult care facilities who sincerely do their best to give dignity & ultimate care to those in their charge & truth be told some only do it because it's a job, but kudos to those who do it many hours a week & come away w/their sanity in tact. My prayers are w/you.

Skizzie ~ thank you for your reply to NY2015. many of us have tried very hard to care for our loved ones at home and simply cannot provide proper care. as for me, a desire to keep my mother with me at home ~ regardless of my actual capability to care for her & an inability to find home help because of my location ~ was, in the end, harmful to her & eventually necessitated her move to a nursing home, where she died last week. ~ there was no viable choice for me & my situation isn't unique. ~ this is one of the most emotionally painful times i've ever experienced & i have seen some very tough times. ~ if this is where caregivers and the loved ones of elderly people come to find support for one of the world's most difficult jobs, harsh blanket statements about 'dumping' & 'animals' are less than helpful. one persons' reality is not another's; one person's approach in these difficult situations is not always applicable or even relevant. i like to keep that in mind when sharing my opinions.

First I am sorry for your family loss, and the future loss of your grandfather. You cannot control ANY aspects of dementia or any illness so don't even try. We family members who caregive for our loved ones have to have a very thick skin, letting negative comments go in one ear and out the other. My husband is 89 yrs. too and going downhill. I think what I miss the most is knowing how he was before dementia, and the little child-like person he has become. You will have to learn to ignore a lot of things when a person is unwell. Love him anyway!

NY2015
I did not dump my grandfather in assisted living home. It was my last resort and he is only 1 mile from where I work. Try to go see gim every other day. I work full time and have my own health issues. I have little to no support from my sister. It is just me to handle everything and struggle with my own life. I have been caring for my grandfather for 9 years since grandmother passed. My grandmother was the only one who took care of bills and other financial decisions. That become my job. Grandpa was falling every other day at home. The home he lives in is nicer than a resort. Activities, dining, movie theater, help with showering, changing clothes, medication, etc... I am very confident he is taken well care of.

Granddaughter, it sure sounds like you have done a great job looking out for your grandfather. I agree that we have to ignore the comments that come up that really don't recognize what you have done and don't reflect what he's really feeling.

When my cousin first went to Assisted Living, she would repeatedly ask me when she was going home. I kept repeating the same answer about her progress being monitored and the doctor would have to sign off, etc. but, she would forget it within minutes, so I just changed the subject and moved it to something new. When she would ask the question, I would say, Look at your hair. It looks so nice. Did you get a new hair cut? or Please, show me the bulletin board. I want to see what activities they have planned for the week. I'd just move on to something new. I'm not sure if it made any difference, but it kept us from constantly saying the same things. I am glad that she stopped asking about that now and she doesn't remember that she has any other home other than the Memory Care facility. She says she loves it there and never ask to go home, though she sometimes says she wants to visit my home.

Also, keep in mind that he could be making these same comments if he was living his own home or living with you. His perception and analysis of his situation is skewed and can't be taken at face value. i hope you find some peace in knowing this.

Just a little support here for Sunnygirl1's last paragraph. It is not unusual for folks with dementia to not recognize their own home, and even while still there ask to "go home". My mother did that frequently in the last few months at home. She would insist it was time to leave, "time to go home." A few times she got out of the house, in the middle of the night, insisting that she was going home. Scared the heck out of the neighbors, with her trying to get into their front door at 3 am, insisting this was her house. All the while my elderly Dad trying to get her to go back to their own house. Had to call the police to help. She didn't recognize my Dad, and asking all the time "Where's Aldo?" (Dad). When I would tell her this IS Aldo, she would say "Not him! I want MY Aldo." ....Being in their own home is definitely no guarantee that they will be happier, or content there. And for many, certainly not safer.

Learning not to take the verbal abuse personally IS possible and realistic. It's not simple or easy, but it can be done. Maybe not 100%, but 50% would help you feel a lot better, wouldn't it?

I think it is easier for people who have been valued and loved, and who are not hoping that our parents will FINALLY recognize our worth. But anyone can make some change in their feelings by changing their thoughts.

1. The elder is MISERABLE. He is in pain, maybe stuck in bed, constantly lost and confused, and often sitting in a wet diaper. Your elder is to be pitied, and not to be judged for not being a nice person. Maybe you need to pretend that this person is a stranger to be able to detach, and respond with pity and compassion.

2. This person's LIFE is miserable. His life SUCKS bigtime. Don't try to convince him that his life is OK in any way. "Grandpa, You're right! Look at where you are! this isn't as nice as your house, and none of your friends and family are here. No wonder you're so miserable! I wish there was something I could do to help. Do you want a nice big bottle of Scotch?" If he says yes, bring a nip bottle, not a big bottle, of course. You want to be on his team, agreeing with him. Offer unrealistic remedies, to try to get a laugh. Calling Obama direct to complain, scheduling a trip to Hawaii, or offering to locate a hitman. might work.

3. When he accuses you, agree and APOLOGIZE that you can't do any better. Keep on apologizing until he gets bored. He will eventually be forced to say, "Oh, you're not that bad. I guess you do mean well."

4. You need the idea that you have the RIGHT to withdraw from direct care and contact with him if it is hurting you emotionally or physically. If it seems like you set him off by your mere presence, you are doing a good thing to back away and oversee his care.

As others have said, this is a job that is impossible to do well. Give yourself credit for showing up in the first place. Cherish it every time he thanks you. Let it roll off your back when he is mean. We all understand what you are struggling with. Be gentle with yourself. You are doing the Lord's work. Pat yourself on the back.

* What was so hard for me personally is when I noticed the person The person becoming more forgetful and eventually confused. It's hard when someone you've known a long time suddenly starts getting very forgetful, when they land in a nursing home, they eventually forget who you are.

* There were times I was running dinner errands and before I left we both knew about when I should return. Much to my surprise, the person actually forgot I was even coming back! I had our dinner and he even forgot about that!

* Another thing that was hard for me of course is when the person refused to shower and even wore the same dirty clothes over and over. I eventually discovered he was actually putting his dirty socks back in the drawer. He eventually stopped when I started talking to him about it, and he even started eventually going to the laundromat but not as often as he should've.

* Despite the place falling down around him, he chose to continue renting from a slumlord who was taking advantage of all of his tenants. I'm glad the APS finally stepped in at long last. The nine apartment house is currently empty.

* When a person forgets to eat or refuses to eat for whatever reason, it can be hard to know why. Sometimes people just don't like to eat alone as I discovered with one of the people I knew. Sometimes all it takes is regularly having dinner with someone who would otherwise refused to eat, but when they don't wash their hands and they touch your food, that's a serious health hazard. In such a bad case as this, the person really didn't like any help in the kitchen, so I eventually had to stop eating there to protect my health. He eventually wised up and started let me do some of the cooking so we could still hang together, because it takes someone with clean hands to be able to prepare the food.

* Another thing that's so hard is when the person keeps their place abnormally hot. If you have a medical condition such as mine where you just can't be where it's hot, this is when you have to leave as soon as you walk into a heat wave, especially during summer when the person has no AC and refuses it. Yes, there were many times I could not visit anymore. I had to avoid the place during summer, and even during winter when we had snow and ice, which was a safety hazard. Sometimes you just don't have no other choice when you don't have a car other than staying in all winter, what does what I eventually had to start doing. If you don't have to work or go out for any other reason, it really is much easier to just go ahead and stay in.

I think what was the hardest for me personally is when I was really not in a position nor did I have the expertise to know how to deal with someone with dementia or even alzheimer's. What was even harder yet is when some big shot lawyer came along and took guardianship, and broke off the relationship between me and the other person. I think that right there was probably the hardest. She had no business doing what she did because she went too far by taking advantage of the situation. This must be what hurts the most, especially knowing she's most likely taking advantage of him for his money because he did have quite a bit before he was taken. I would've never known this unless someone knowledgeable pointed this out and explained it to me. If you ever wonder why some lawyers never want to talk to you when I have guardianship of your loved one, it's most likely the probably wanting some big money before they'll even talk to you. Had I known what was coming, I would've never given her any information whatsoever, but I didn't know

Someone here mentioned something but also sounds familiar to me, and I I'm so puzzled and so stoked I just don't understand:

Why is it sometimes people you've known for a long time get aggravated by your presence, and what's even more puzzling is going to visit them in a nursing home they get upset behind your back after you left. This has only happened to me twice that I know of, with the first one going on for quite some time until one of the nursing home staff finally filled me in on what was secretly happening. What stopped me most is the person kept saying begging me to please come back even tomorrow, and even if I did, I never knew they were secretly getting upset after I left. I didn't know anything about it, and I was too far away to even get a clue anything was going on. When I heard about it, I was actually shocked and puzzled, and this is something I still don't understand. The only thing I can figure out is that maybe they secretly want to leave with you but don't know how to tell you, and when you leave without them, they're still stuck in lockdown while you're out in the free world. This is the only thing I could really come up with to help me better understand what might be going on, and this is the best I can come up with. If you see things from their viewpoint, it would make some sense because you can come and go as you please and go where you want to when you want to but they cannot. this is the only thing I could come up with to help me better understand what might be going on in those particular types of cases. I used to sometimes visit people in nursing homes, but just knowing the truth about the settings is what made it too hard for me to continue. What made it even harder yet is what I described earlier in this specific post. I start to question whether or not I should continue ever visiting people in nursing homes just because of my bad experiences and even the bad feelings that come with walking in the door and having it shut find you. What I hate most is when you visit someone in the Alzheimer's wing is when the door actually locks behind you. Someone has to let you in and out by unlocking the door. I think this is why so many elderly feel like nursing homes are actual prisons. If it is hard for them, think of how it also is for the visitors. The only differences visitors can come and go anytime, whereas residents cannot

I like to be in control of my space. With a Dementia patient there is no control. After almost year and half, my Mom still thinks she is visiting. I've also been thanked and then accused of not letting her do anything. Your grandfather is not himself. He doesn't really understand what is happeningto himself. You could explain 100x and he wouldn't understand. All u can do is be there. Just agree and smile. Don't take offense. If he gets nasty, leave. He won't rememberthe next day or the next hour.

Sorry for those who have had problems with nursing/AL facilities. And I can appreciate what some caregivers give up to take care of one or two parents. What I do on a daily bases for Mom is small incomparison. I believe it is best if they can stay with family but not everyone has that option. People have families. Jobs, they need to pay bills. Taking care of a loved one for an attended period of time is stressful. I feel if the money is there, use it. AL where I live are very nice.

People who want to "control" others rarely do. They only end up being frustrated, angry and insecure. People who live longest have a sense of humor, and let things roll off their backs. Good advice for those who care for loved ones with dementia. We could all use extra tons of patience!

Sometimes people do not believe what happens to other people until it happens to them. That is the reality about human nature. It has to happen to you before you believe anything so keep on trusting all those nursing homes. We pay a price when we are blind.

To Skizzle: The nursing homes are open. I cannot shut them down. I wish I could, especially the ones that kill people and try to find ways to justify their behavior by manipulating records and doing other weird things to make themselves look good when families are around. I guess you have not had bad experiences yes. I wish that you will not because if you do you will remember my post here. The best to you and your family.

NY2015 We have read what you said. And, we've expressed our condolences for your negative experience with nursing homes. Time to move on now.
Have a great day and thank you for your opinion.

NY2015 , in your post you said: "Sometimes people do not believe what happens to other people until it happens to them." I think this is exactly what you are experiencing right now. The majority of us here are having, or have had, a totally different experience with ALs and NHs than you had. Perhaps you need believe that you have not experienced the vast majority of facilities. I believe you had a bad experience. Perhaps you need to believe that our experiences are not the same. The dementia care facility that my Dad was in was wonderful, and I thanked the Lord for them everyday he was there.

Ny2015, You're not the first Superhero we've seen on here. We know you LOVE more, CARE more and KNOW more than the rest of us in regards to own individual situations. GOT IT!

Rumor has it that the most loving and caring people are very often the most abused. It seems like this might have some truth to it because it would make perfect sense

TO DOING BESTICAN: I am glad your father is being treated well. I am not asking you to sympathize with me on the death of my grandmother. Yes, mine was a bad experience and yes I know we all go through different experiences with these nursing homes. All I was doing was just putting the information here for those of you who wish to know. If your nursing home is treating your Dad well then that is wonderful. I hope they continue to take care of him for a long time. I will pray for your family. Take care

to windytown: I am not trying to be a Superhero nor do I intend to know more about anyone else here. I read these posts all the time and I see there are wonderful knowledgeable people with different experiences. As I said a minute ago all I was trying to do was write my own experiences and what I feel was right to contribute to the posts. You don't have to get so defensive about nursing homes. You probably work for them too or you have probably been brainwashed that they are here to help you.If they are helping you then good for you. That is why you are getting so paranoid. Take your medicines if you need them and calm down. I am not trying to generalize. I am just trying to contribute to the posts and tell about my own specific experience. There may be good people out there, but we never met them in our experience because we never depended on nursing homes in the first place. Good luck to you. I will pray for you too.

NY2015, You say, we don't need to defend the nursing homes. But you basically accused ALL nursing homes of cruelty, lying and murdering; a statement that accuses all of us who have had to place our loved ones in them, of the exact same heinous acts. Of course we would defend the facilities, since we are essentially defending ourselves against these very hurtful, and blatantly false accusations. ....BTW, don't bother suggesting that I too must like to argue. I'll save you the trouble. I love to argue. Especially when I'm right.