Dad's dementia causes him to make me feel guilty by what he says. Advice?

I don't feel guilty for the things mom SAYS, but for the things she's doesn't do.

When I see her sitting day after day after day in her wheelchair, it makes me sooo sad. I feel like I should DO something. I do send her to Adult Day Care (I call it The Senior Center for her sensibilities.) once a week and would send her more, but she doesn't want to go. We have company at least twice a week or more often.

I try to include her in conversations. She responds but never initiates. She's surrounded by love and patience here. I cater to her as best I can. It's all I can do.

But day after day after day in her wheelchair. Looking sad. It's a heartbreaker.

I think one way or another all of us feel guilt. Such is the nature of care giving for a loved one . . .

Remember, no one can "make" you feel guilty except yourself. Taking care of a person with dementia requires the caregiver to have a very thick skin and to let whatever they say roll off your back. Do not take his comments personally. It is the disease that robs him of his correct thinking and thoughts. Not about you.

I wrote a long comment here a few days ago. I think you can find it somehow. It was about my grandmom, I took care of her for many years going back to 35 years and I kept notes on her behaviour all those years. I went to college and graduated in Biology then I became a medical laboratory technologist so I like details. I loved my 103 year old grandmother so much that I quit my job to take care of her better because I was refusing to put her in a nursing home. We lost her in a nursing home last March 2013. The behaviour that you describe here about your father is that same that I observed in my own grandmother a couple of years before we lost her. A lot of people here also comment about the same things. You are right in saying that he does not seem to keep track time of time. You have to remind them all the time and what he said about not eating even though he ate was the same exact thing that my grandmom would complain about. Remind him and simply ask him if he wants to eat more. How old is he? Make sure he drinks water. As you will find out or know already if they dont drink water that creates a huge number of problems including hallucinations which my grandmother went through. It was painful for me to see what she went through. I slept on the chairs next to her in the emergency rooms. I was running around with a big folder with all her records from before whenever she had to see a new doctor for some reason or other. Taking care of elderly parents is work. This is why I quit my job. I had savings and that helped me. Now I am planning to go back to work again, but I know one thing for sure...I will never want to go into a nursing home when I get old. I prefer to die alone. I lost my marriage. The girl that I married left me because I was of course taking care of my dying grandmom. The girl was selfish I think and even though the divorce hurt me deeply, so deep because I had just lost my grandmom and two other relatives I will force myself to forget her. She was supposed to support me and follow me in my grief. She instead attacked me. I visited her mother ( eastern Europe ) and I told her she told me to forgive her daughter. I feel very hurt because the divorce felt like another death in my life. I lost everything. In esence, what I am trying to say is do your very best to take care of your father because you will only have one father. Read the other comments here about how to take care of family members. It is helpful. And dont let your fathers dementia make you feel guilty. My grandmother's dementia ( without going into so much detail here ) came from " atherosclerosis " her hematologist explained to me. She had " plaques " in the carotid arteries in the neck. She had 99% blockage ( stenosis ) in the left one and (40%) in the right one. The right one was compensating for the left one. As you know the brain needs a lot of blood to function properly, so what happened was that little pieces of the plaques started to break off and travel into the brain causing symptoms which her hematologist called " vascularized dementia ". The fact that she was not drinking water too much caused her to become dehydrated which caused her to hallucinate which caused her not to sleep well which affected her blood pressure and I think it also affected her " vascularized dementia " because a high blood pressure would cause the plaques to break off in more small little pieces. This is what happened. I knew her entire medical record because I memorized it. My grandmom was afraid of dying and it hurts me, but when her dementia set it she changed and it hurts. I cannot write anymore about her. You will get the point. Take care of your family. Love them. God bless you all.

I'm inclined to believe that both you and your girlfriend are right. It's true that when memory is failing, he may very well not remember what he ate for breakfast that day. And it's true that when walking is difficult, it likely seems to him that it took hours to walk home (FWIW When I tore the tendon in my ankle, just getting from the car to the house seemed like a marathon.) But your dad has access to clocks just like you do, and I'd bet my bottom dollar, that he knows darn well how long it actually took. But saying "I walked home, slow and steady, not only makes for a boring story (from his point of view), it does nothing to engender your sympathy and continual attention. And be warned, that people will do whatever works for them. I used to fall for my dad's "poor me, pity me" routine, and pay lots of attention to his complaints. Boy did he ever latch onto that idea, now "poor me, pity me" is his go-to routine in any situation where he feels the need to control me (and other people). I wish I had an answer for you, beyond developing that thick skin that ferris1 talked about. If you've been rewarding these comments with lots of attention up till now, it's going to be hard to break the habit, for both of you. With my dad, I fear this behavior is permanent.

FYI...neurological impairment can affect the ability to tell time properly. One of the tests administered to my Dad with dementia is to draw a clock with the hands at 10:50. He can make the circle and can usually get some numbers on there, but he can never put the hands in the right place. He told the doctor-that's why I wear a digital watch! Not sure what kind of clock is in your home but consider at least one digital one and the perception of time may improve.

Inhabit his world as much as you can. When he says he hasn't had anything to eat all day just answer "Well, I'll make us a real nice supper". Time loses all shape and structure as dementia takes over. My mother, who will be 95 in November, lives second to second and I try to just go with whatever she says as far as time. Distances and spatial relationships also suffer as when my mother says she went downstairs for dinner when, in fact, her room is about ten feet from from the dining room.I know how difficult it is to watch a parent lose abilities that we all take for granted but that's their reality. Do not try to explain time or space to your father because it will only upset and confuse him. Good Luck

I think the answer to your problem lies in the first two words of your statement: Dad's dementia. It's HIS perceptions that are off the mark and you can't argue or cajole him into thinking differently and don't take his comments personally.
If he claims he hasn't eaten a thing all day and you know he has, say something reassuring like, "I'll make sure you have some snacks handy. What would you like." If he's upset because he thinks he's walked for an hour, it's not your fault, just acknowledge it. "You do look tired, Dad. Can I fix you a cup of tea?" or something positive like, "I know it was difficult, but I'm proud of you for getting out of the house."

If you can, buy the book The 4 Agreements. In it, the author talks about being your best. It helped me see that even in my most difficult times, I can be my best, AND my best changes. Even when I feel guilty, I can pull myself out of feeling bad because I know I am the best I can be at that time. I learned that I have to give myself a break. It helps when I think about what I DO contribute to others. AND by thinking that way I'm contributing to my own well being.

just to add a note of humor...my aunt is in rehab with a fractured knee and her nephew is the attorney in fact...the nurses told her what a good nephew she has at taking care of her and visiting everyday...so she asks him why? he says who else would do it and if i were in your spot you would do the same for me, right? she comments back, well, no nephew, i wouldn't...you have to admire her honestly and lack of guilt...lol

My mother did the same thing. You have to separate the dementia. My mother would say she hadn't seen me in weeks when I saw her almost every day. She would always pronounce that she hadn't had any food. The list goes on and on. You have to let your guilt go, it is hard but realize dementia changes the brain. You have to go with the flow, it is best for your loved one and you. As my mother's decline continued, she decided I was her sister. If I corrected her, she got very upset. Not worth upsetting her! Best wishes.

Seacoast69, I think that your girlfriend doesn't understand the nature of dementia. That is unfortunate but not at all uncommon. Depending on how serious your relationship is, you might want to help her educate herself ... or just don't take her observations too seriously.

You seem to have a much better concept of what is going on with your father, but your feelings don't seem to have fully caught up with what your head knows. What do you have to feel guilty about? You did not cause the plaques or tangles or deposits in your father's brain. You do not control what he says. You are not, in fact, starving him, or making him walk for an hour. Dad's situation is sad, but none of it is your fault. No logical reason to feel guilty!

But feelings aren't always logical and guilt seems to go with the territory when caregiving. We want to fix things and we can't and that makes us feel powerless and guilty. So, if you cannot turn off the guilt feelings, at least push them to the background, and make your decisions without regard to the guilt.

Others have given you great advice about dealing with exaggerated or untrue statements from Dad. Do NOT try to reason him out of what he believes. His reasoning power just isn't up to it. He hasn't eaten all day? You know that isn't true so you have no reason to feel guilty or to defend yourself. "Oh, I don't know how that could have happened! Let's make sure you get a great supper. Do you want a little cup of soup now, or do you want to wait until the rest of supper is ready?"

Your goal is to give Dad good feelings, to assure him you take him seriously and that you care about his needs.

Your profile mentions your dad's heart condition. Usually dementia is a bigger factor in how we behave as caregivers. I suggest updating your profile with that information, so in future conversations that will be clear to anyone who looks at profile before responding to you.

My father forgets he is eating while he is eating! Or her goes to the bathroom in the middle of eating and comes back via the kitchen where he searches for food even tho dinner is at his chair already.

I make sure he has a stack of snacks by his chair during the day, slimfast, protein bars, cut up fruit, banana, etc. He has a trash can next to his chair (lined with plastic bag) so he sees the debris from his munching.

I also find, "I'm sure it seems like that." to comments about cold at 90 degrees, or in your case the hour walk. He gets frustrated and sad about his confusion sometimes and I say "Don't worry, that happens sometimes when you get older. That's why I am here, to help you." I say these things in a "no big deal" way, even tho internally his decline makes me sad.

Good Luck.

pipruby, "Don't worry, that happens sometimes when you get older. That's why I am here, to help you." is a GREAT thing to say. I don't bring it up unless my mother is worried about her memory. Then I say, "Don't worry about it Mom. The people here remember for you. They always come and get your for meals (or bingo or her hair appointment or whatever she is worried about forgetting.)

And I like the "I'm sure it seems like that." I'll borrow that for when Mom complains she has been waiting for an hour for help to the bathroom, or that the room is too cold.

I agree with Ferris1; you have to be thick skinned. My mother and mother-in-law both say things very hurtful, but I know in their right mind they don't mean it. I usually change the subject to get their mind off and onto something more positive. Try to get away once in awhile and spend some time doing something you enjoy doing, i.e. visiting with a friend or working on a project.

My dad like telling us he has his own home and can live there. He never stops trying to make us feel bad. He cant live on his own when he is of a generation of men, who could hardly boil water, let alone cook an egg. We have tried several facilities, he wont go, but we are determined to find the right one, if there is such a thing. It is difficult, but we no longer feel guilty, because we know he 'plays' us and or in his mild depression with dementia , doesn't care or know what he is saying.

TO SEENYPA:
I have just lost my grandmom in a nursing home. I am someone who lived with her all my life. I got married 6 years ago and the girl that I married divorced me because I was paying too much attention to my grandmom because I loved my grandmom and she was getting weaker and weaker yet I NEVER said to myself or anything that " I am determined to find the right " nursing home because they dont like them. They dont they are not going to be treated correctly there and they know that it marks the end. I feel very very guilty after quitting my job 4 years ago to take care of my grandmom myself and after watching her carefully over the past 35 years I feel very guilty that I lost her in a place where she felt abandoned and unfamiliar. She did not speak English and she could not hear very well, but she could at least feed herself and she could still carry on a conversation, so for you to say that you are determined to find the right place for him he must feel hurt by your words because they dont like nursing homes, In my case I should have brought my grandmom with me to the house even if she had died with me quietly I would have accepted it, but I feel very guilty that she did not see anyone around when we lost her. I was visiting her everyday up to the night before and I would have stayed with her all night, but I was walking around sick and running a fever and the nursing home where we lost her did not let anyone stay with the relatives there. They were fakes because if you see my other comment here I wrote that they did not even give her all her medicines or water. They did not even help her go to the bathroom because even the floor doctor told me that on an X ray that they did of her lungs they saw " a lot of stool in her intestines " which obviously shows that she wanted to go to the bathroom and no one helped her. We also saw her with bruises on her faces and swelling in the legs. She was supposed to get physical therapy and clearly she was not receiving it. I dont know how much you love your dad, but if you love him the way I loved my grandmom and something happens to him in the nursing home because you never know you are going to carry a lot of guilty for the rest of your life in your heart. That would destroy your life if you love him a lot, so try to get a relative to help you look after him. I am now single again. I lost my grandmom and my wife. I feel I am going to be alone without a family for the rest of my life. I see it coming because I am not going to trust marriage again ever in my life and clearly it means that I will not have a family or children who will at least look after me. I think this is a punishment from God because that means that I might not last as long as my grandmom. I dont know why God was so cruel by taking the two women that were the most important in my life. I never did wrong to anyone for me to be punished like this. My grandmom got married at 20 years old. She has family but they are all spread out here in the states and Canada. I was the only one who was here with her. Now, when I get old and weak I would want to die alone in my room. This is what your dad is probably telling you. He is afraid of staying in an unfamiliar place. When he says he wants to live by himself he probably means he would like to " go " in a familiar place, with you at least around if you love him. It is a sad situation. You should stick together more closely. You should not dump him in a nursing home. I still remember my grandmom's cries saying " get me out of here. I dont want to stay here. I want to go home ", Even though I get commended by her doctors and everybody who knew her and I took care of her medical visits and follow ups closely for 35 years, in addition to my job which I quit 4 years ago, I still feel guilty because I feel I could have done more. Can you imagine this? I would have never said what you are saying because I loved her and my wife like you could not imagine.

Hi FriendlyKarl,

Your love and loyalty to your grandmom is admirable. Seriously I think that it is the cycle of life and that parents should be selfless enough to want to let our children 'move on' and be happy and make a life for themselves with their partners, especially after we're gone. I raised my sons on my own for a long time, but I am happy only when they're happy, its what I want for them. I made my choices in my life when I raised them and now I would never want to stand in the way of their choices. They love me I know, and we're close, but first, I want them to be happy now. Its their time. They too must have the experience of having a family of their own. Its the most natural thing to do.

I think you may have misread with me saying "a right facility". What I meant was a good or better facility than we've seen thus far. My dad was a part-time father and gave us very little of his time, but we did the decent thing and took him in when his wife died. Me and my sister are his only kids. He is at a point where he needs full-time care and we work and are unable to be there full-time apart from the fact that we're not 'natural' nurses. It can only be to his benefit to be taken care of properly where he can receive and be surrounded by people his age he can relate to. Generally the aged don't want to go, but I would never want to burden my boys or play on their guilt for having raised them. The reason? I love them too much to do that to them.

Life is about change and I hope you change your mind about finding someone again to love and move on as I am sure your grandmom would like for you. :)

hi, I hope you feel better. Whatever your dad says, please do not take it personally, do not feel guilty, he can't help what he is saying. My grandmother also lost her sense of time. At one point it was as if she enjoyed complaining (about things that happened in the past) and making herself upset, but that was probably because something in her brain or memory kept rewinding the same bit over and over. Please do take care of yourself. Best wishes.