Why is dementia so painful to family?

Back to the question. I think dementia is so hard on the family caregiver because it is a disease of chaos that can't be controlled. Most of us like having some control over our lives, dementia allows so little. We can't control how our family member thinks or reacts to situations. We can't even help them in so many instances when we obviously know they need help. And, we know that there is no end to the situation until death finally takes our loved one.
I have decided that old age is a time of loss. A loss of family and friends that have passed on. A loss of home and possessions. A loss of dignity and respect. Is it any wonder some older folks get depressed or grumpy. Someone said earlier that all we can do is love them and not take things personally. I think that pretty well sums it up.

Sorry, I meant to say d"don't take it personally is NOT very realistic.

Good advice from everyone but hard to do in reality. My partner of nine years (we would have married but he was on Medicaid and wouldn't qualify if my income was included) has dementia at 55. I cared for him in our home until he lost his ability to walk and had to use his motorized wheelchair to go anywhere and our home was not conducive for his needs. He had already become very abusive to me and we both agreed it might be good for us to live separately and I would still be his 7 day caregiver. I found a fabulous small independent living apartment in a retirement community overlooking a golf course. This place offered everything he needed - memory lab, physical therapy, gym, church and tons of activities. He took advantage of none of the above and I could not force him to do anything. He declined rapidly and all his anger was directed towards me. I hung on and on and on reminding myself he was not responsible for his behavior but it was extremely painful and depressing and my anxiety level was creating major health issues for me.
He was originally from Pennsylvania but no one kept in touch with him but his mother. No one even his daughters. None of them knew what shape he was in but talked him into switching his POA from me to a brother he hadn't spoken to in seven years. He called me to come over to help him with several issues on a Tuesday. On Thursday I called to tell him when I was coming over but his phone was disconnected. He had up and moved out of state without a word to me. I had tried to explain to him his family would not accept responsibility to care for him and would stick him in a nursing home but he wouldn't believe that. As I expected he was in a nursing home where he will remain until he dies. They have convinced him to cut off all communication with me and I now have to deal with never knowing how he is, where he is etc. this is exactly what I was trying to prevent and worked nine years to keep him as independent as possible. Sometimes much of a caregivers pain comes from other family members who should be working in concert with you instead of making things worse or impossible to deal with. I miss my partner, even with dementia. I just want to fix him a nice dinner, watch a movie and hold him tight and calm his fears but that will never happen. Blood relatives are not always making decisions in the best of the person with dementia. He is now stuck in a nursing home without the one person that was truly committed to giving him the best possible care. This issue can put the best of families at odds with each other and the efforts of the caregiver are disregarded totally. One person can only do so much and give up their own needs for the person who has dementia. It's hard enough to watch the decline of your partner but to be sabotaged by the family working against you was almost as painful. I received my support from a shrink, lots of meds and my church but even that was not enough. I would not wish this on anyone. I don't think my life will ever be what it was before dementia invaded our lives. No matter what your attitude is caregivers pay a huge price for trying to do the right thing. It's a d@mned if you do damned if you don't situation. I pray each day for the caregivers of the world. I wish you the best but I don't think "don't take it personally" advice is very realistic.

NY2015: Unless you walk in another's shoes, you don't know what others have been through. Our Mom has good genes and that is why she is 101. She was independent, she wanted to be. We have always been a close and loving family. Mom had her own home which we did double duty caring for until we could no longer physically do it and she was 92!. She then lived in IL and AL up until six months ago, still independent.
My sister and I are seniors too with health problems, and sis just went through caring for a dying spouse and then had major surgery. My home is not senior friendly, even for me! I have vertigo and back problems which affect what I can do. Mom has dementia then recently became frail and unable to walk and needed 24/7 care, which none of us can physically do. She never wanted to live with us. She was happy with a visit and I still did everything for her, shopping, laundry, etc. The NH has been wonderful. She is babied and cared for gently. We have bonded with her aides. Her longevity has nothing to do with where she lived.

Stay strong and YES do not take it personally...there are a lot of bad days, and at times all you can do is shed a tear.
All I can hope for is more better days than the bad and for my love one not to be in pain. HANG IN THERE

I haven't read all the responses. The question is, why is it so hard for the family. I would like to address that and not go into all Grandpa's issues. As family members and caregivers, most of us, have an understanding of the disease and ramifications, both physical and emotional for the patient. For a family member and caregiver, which I am for my 95 year old mother with temporal lobe dementia, it is a harrowing, out-of-control rollercoaster ride 24/7. One has to take it moment-by-moment because the changes are so sudden. The grieving for the loss of one's parent/grandparent continues day after day. It's the hardest, most difficult experience of my life. People on the outside, or those that are under-informed about dementia do not understand. And here is the saddest part...there is nothing we can do to stop our pain, we can only try to mitigate it. Find joy in a good moment with your grandpa, that is the best you can do.

NY2015 It's too bad you had bad experiences, but try not to be so judgmental. You have no idea what is going on in other people's lives. Many people try their hardest, but just have no possible way to keep their loved ones at home. We all come to this site for help, useful tips and compassionate understanding, not to be made to feel bad for not doing what others feel is right. Please be gentler in your comments.

Amen

NY2015 I resent your comment!!! I put my Mother in a Memory Care center because I LOVE HER and I realized that I alone was no longer able to give her the care she deserved!!! It was not an easy decision, but it was the right decision. I'm sorry you have had a negative experience. But, don't lump everyone and all facilities together. I'm grateful everyday that I found a place that can meet Mom's needs with kindness and respect.

Because keeping patience is not an easy task.

All of responses are helpful, especially since caregiving for a loved one can be so difficult. I cared for my mother for five years in her home. She didn't understand what what was happening to her, but she was aware of others.
There were challenges when she wandered the neighborhood or when i took her to a store, but i did my best to give her joyous times as well. I took her to her favorite restaurants and to visit relatives and long time friends.
She loved her Mexican music and that became the best therapy for her, day or night. She even danced to the music.
Unfortunately, my sister didn't want me or my mother to be in the house. Neither did she want to take care of my mom. So she hired an attorney and moved my mother to a facility in Compton, 300 miles away from home.
I visited my mom every weekend, but it was not enough.
My mother lasted only six weeks at the facility and died of loneliness, not Alzheimers.
It is bad enough to suffer from Alzheimers, but to be mistreated by a daughter is even worse.

Because keeping patience is not an easy task.

Unfortunately, there are no easy answers re those we love and dementia. I did my best to care for my mom in my home for two years. I always thought it would work having mom with my husband and I but after two years of her living with me she was so unhappy, lonely, bored, mixed up, confused. I have no support system around me. One brother who lives in another state. Moms dr suggested she live in assisted living where she is with others her own age, around the clock care, activity which is so important for the mind which has dementia. It "killed" me to do this, but my health was at risk because of stress and also my marriage. It's been two years now. I visit her two times at least every week. When I'm not visiting her, the aides tell me she's happy, laughing, interacting in activities. When I come to visit, she's sad, begs me to take her home, etc. The guilt haunts me at times. If I had family around me, I'd probably have kept her with me and worked out a schedule with family. In a perfect world. Reasoning is gone with dementia, so it's an off again on again deal. Recently I had mom with me when a blizzard hit and she stayed with me two days. As we navigated the days together, the guilt I've dealt with having her in assisted living dissipated as she wanted to go home. Mom wants her family. I was able to get her to verbalize what would make her happy. She longs for her mom and dad. Her life with me, my brother and dad are not in her radar any longer. In a strange sort of way, this brings me peace knowing this is what she longs for.

Dear granddaughter, so much information here and much of it helpful. I would like to add a couple of thoughts and comments. 1) you are being an amazing granddaughter!!!! 2) dementia is one of the worst diseases for everyone who comes in contact with it, 3) keep in mind that your grandfather does not intend to be mean or confrontational. What has happened in the simplest of forms is "brain failure". We all know about kidney, heart, liver failure and how those diseases affect that organs ability to do its job. Well brain failure does the same thing. The persons personality, kindness, memories, reasoning skills, and most of all recognition of people place and time are all lost. This is hard. I know people with PhDs who don't know their home or cannot add 2+2. It is hard.
So that brings me to my comments. Get outside help for yourself and anyone else affected. Find a support group as they can help you with coping mechanisms. Read online or email me about courses on the stages of dimentia. Continue to love your grandfather as you always have. And while I do not like the words used, remember the acronym, QTip. Quit Taking It Personally. Your grandfathers brain is failing. Who he still is is the amazing man who your remember and who you looked up too. If I can help please email me at All the best and hang in there.
One other comment, nursing homes do not "kill" people. One does need to stay strong as an advocate for your loved one. Ask questions, be involved in their care because he no longer can. This is true anywhere in the healthcare system. ASK QUESTIONS

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!

Yes, it's very difficult! My father is demented too, and can be very violent & agressive, so he has to be medicated...he then becomes sweeter! My mother is the same age (80) & extremely bitter, complains about EVERYTHING!
They live by my sister and she has taken a lot of the burden of trying to feed my father; for 2 months he just spit the food all over the place...he has started to accept food now. They have home care 3 times a day, and I now go there on weekends.
My biggest problem is that my sister doesn't want to medicate my father enough (we have the meds prescribed by a neurologist), she feels some sort of guilt & forgets how dangerous he can become when he's enraged...I have seen him try to trip my mother with his foot, kick all of us on the head, bite us, bang his head against ours and shove his nails into our flesh...once he stood staring obsessively at 2 knives that were on top of the table. We have been restraining him to the wheelchair and his right hand at all times, but as he regains his strengh he'll become more of a menace, especially for my mother who is with him all day.
So, I keep on telling my sister that we have to administer all the meds prescribed and administer the respiradol according go his mental alertness; if he becomes too sleepy we give less...this has been a battle for she doesn't like to see him drugged, but it's not fair for everyone around him to become his punching bag! We can't save 1 and have him destroy all of his caretakers, right?
About hospitals and nursing homes, I agree with NY2015; their specialty is drugging the difficul people to death, but they can't have person to person care, so we either stop our lives and do it ourselves (which I don't agree with), or we hire people to help at home...luckily my father has enough secret savings for his care, but we have to have a lawyer resolve the POA issues because he was always PARANOID that we wanted to get rich with his savings! Hugs to all

I went through thus with my Mom a few years ago. She would often confuse me with my Dad who had been dead for more than 30 years. In that context she would get angry with for wrongs both real and imagined...I could only guess!
She also thought she was in places and with people she hadn't been or seen in 50 or 60 years. My approach was to just try and meet her "where she was"...not correcting, not questioning, not reprimanding. It was best for both of us.

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.

I'm going through this right now and all your answers were so helpful. I'm the closest daughter of three siblings and my siblings have no clue to the pain and sadness when you've always been the one there and they are in different parts of the state making excuses and hiding there head in the sand. It's heartbreaking to be told you aren't welcome there etc. My dad is just covering for her. but receiving a lot more of her rage as he is living in the same house. I continue to drop food off and try to help from a instance but my mom goes off anytime I send her something. I can only support my dad right now. Thanks for your helpful comments as I will just continue to show them love and support!

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.

Sorry about the typo errors.
Americans in the United States wonder why some people live long past 100. They ask them what is their secret. Only a fool will ask them such questions. They do not realize that the secret is in the family. If you keep your loved one with you and not dump that person, if you really loved him or her, in a nursing home or assisted living which is a business here in the United States supported by hospitals which claim they care your loved one will live longer. I assure you of that. Diet also has a lot to do which everyone knows, but not the former. This is why I am writing here. A relative of mine was killed in a nursing home. I almost lost two at the same time, so if you trust the system go ahead dump all your family in a nursing home or assisted living, but one word of advise you better get ready with cemetery and funeral expenses and if your loved one is unable to care for himself or herself the facility with those animals will find a loophole to get rid of that person and you will not be able to do anything unless you are a fighter. Nursing homes and assisted living facilities always try to defend themselves in this country even when they kill a person by manipulating records, looking for loopholes in the law, etc.

Americans in the United States wonder why some people live long past 100. They ask them what is their secret. Only a fool will ask them such questions. They do not realize that the secret is in the family. If you keep your loved one with you and not dump that person, if you really loved him or her, in a nursing home or assisted living which is a business here in the United States supported by hospitals which claim they care your loved one will live longer. I assure you of that. Diet also has a lot to do which everyone knows, but not the former. This is why I am writing here. A relative of mine was killed in a nursing home. I also lost two, so if you trust the system go ahead dump all your family in a nursing home or assisted living, but one word of advise you better get ready with cemetery and funeral expenses and if your loved one is unable to care for himself or herself the facility with those animals will find a loophole to get rid of that person and you will not be able to do anything unless you are a fighter.

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...

I loved reading this thread... It has given me the strength to mimick you guys and try to be caring from a distance. I looked after my 'end of life' dad for 6 months, he has bowel cancer that had spread to his liver and lymph nodes, a triple AAA, the biggest incisional hernia you've ever seen and a stoma, he's 91, with cognitive impairment. He has never been formally diagnosed with dementia?? All his life he's been a difficult man and my poor mother's life was dreadful. However ... I was always a 'daddy's girl' but then he just turned on me. I was so upset and it really did turn my life upside down... I'm in therapy and on anti depressants. Although his consultant said he wouldn't last the weekend of 23rd May 2015... He's still here!! Thank you to all the people that contribute to this blog xx

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.

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.

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.

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.