Does anyone else have trouble mentally connecting with the person they care for?

Jude, I have trouble with people saying "It's not them, it's the disease." Some things are the disease, but other things are them. When we know the person, we understand these things.

It wouldn't bother me to be taped as long as I knew it. I would be on my best behavior, however, and not my real self. I wouldn't want something I did or said to come back and bite me in the butt later. For example, what if a false accusation was made and they have you on tape saying you want to wring your parent's neck sometimes. Our own words could be used to convict us. We do have to walk carefully when caring for someone to avoid even the appearance of abuse.

I so like the idea of a better way to care for people with dementia. Is it Denmark that has the Alzheimer's village paid for by the government? People with Alzheimer's can live somewhat normally because everyone working there is dementia aware and know what to do. I'm sure it cost the government a bundle, but maybe no more than private citizens, insurance, and the governments pay for dementia care in the US now. .

meowser, your story reminds me in some ways of my great-grandmother; she, too, had a stroke I believe when she was probably the age your mother was when she had hers; I really didn't know her then, not sure I was even born, just know that I don't think I remember her from before she had it, just know she lived to be 96, I believe. Not sure if anything else happened to her or not, like you mom, that I hate that so bad, especially at her age, because I know somebody who had that when somewhat old, but not nearly that age who came through it and got over it, but anyway for whatever reason she wound up either being placed or let stay in a NH; not sure they even had rehab back then. Now I'm not sure how much was her or the place since I was told she was rather a controlling person back in the day but she certainly wasn't by the time I knew her but when we - my mom and grandmother would go see her - would go see her they would say the nh was controlling her to keep her, I guess, from being controlling herself; I wonder if it's because she didn't have family caring for her before; my grandmother was a widow and had to work, not really sure why my mom didn't though not so sure but what it wasn't a good idea, considering what I saw of her later with my grandmother but anyway before she went into the nh pretty sure my great-grandfather was still alive to keep her at home, not exactly sure who actually took care of her but believe was told they at least had some help coming into their home to at least take care of the house, if not her, who she probably couldn't control so she probably got used to not being able to do so - could be maybe we don't do them any favors by taking care of them the way we do? I'm pretty sure we certainly didn't go every day and so definitely didn't spend large portions of days with her, though when we did go we did. I'm not sure how her meals were typically done, although I do know she was bedridden when we were there, something they would talk about and I know that at least she wasn't always before she went because I have pictures of me with her from before she went where she wasn't, so it wasn't like she could go get it herself but she didn't wither away and die so she must have been getting fed some; I just know we certainly didn't go every day and do it; now the dentures thing, that was my dad! but he would have done it himself - yea, and pulled everything loose he was hooked up to doing it - does seem like they could do things a little more like a dentist office and have things closer to them so they could take care of things like that themselves if they want to. But also in addition to being bedridden she didn't - couldn't? talk, which was something else they talked about like she did before, although I don't remember her ever talking much or at all, really, but at least according to them she did more than she was at least as I remember her, so there certainly were no conversations with her but more to a point here that's been brought up is that it was said of my mother that she "certainly was no hand to carry on a conversation" so not only was there not one with my great-grandmother but there wasn't one between my grandmother - who certainly could - and my mother - and they sure didn't try to carry on one with me - mom rarely did and I guess grandmother wouldn't with her around since she and I certainly did when she wasn't! So though not really sure what my great-grandmother's interests were, although I never really got the idea she really had any, I know my mom, though she had them, was never really interested in anything you could really carry on a conversation about; now my grandmother, the things I learned about her later that I wish she'd talked about with me; again, I wonder if it was because of my mom that she didn't. Although I do wonder if it was more just a matter of it being my grandmother, her being the oldest child that, as I understood, her role had always been to take care of the 7 younger ones that, as they say, just kept coming out, and she was never really given any attention - at least, until she got typhoid fever when she was 17 - but also she was the only daughter who stayed around and we know what's been said about that; it wasn't her who put her in the nh, however that works when you have that many kids; it was her youngest, who, as they say, when her dad died, swooped down from out of state, swooped up her mother and dropped her in the nh and left and never came back, basically, at least, to see her or anything but yet she was always the "golden daughter" so whether she could have given commands or nay or whether she was just used to basically ignoring my grandmother since there was nobody else for her to take care of for her that's the way it seemed to be anyway. I do somewhat think that if she were - if indeed that was the issue - able to talk she possibly would have been the way your mother is so maybe, again, if that was the case, it was a good thing that possibly she couldn't, in that sense. But I'm just now realizing how old you were when you started this journey, still just in your 50s then like I am now and mine, at least with my parents, is already over (so, yea, I know, why am I here? well, I signed up on this when I was going through it and it's started showing up on my newsfeed/inbox, whatever, so in my what started off as being somewhat spare time, thought I would just check in, see if I could be of any help, having already gone through it; if not, just let me know and I'll check it out, though not like I don't have other things to do, like now)obviously - I think - my mom didn't live as long as yours; she died when your was just starting her journey but then I think she may have started earlier too because she did have something happen to her - a stroke? - 10 yrs. before so maybe I did have my 10 yr. journey as well, just started earlier and younger and at the end we probably should have put her in a nh; at least her last year things were pretty hairy and complicated but we had somewhat those same issues of not connecting but it did make it better that we started off that year on a pretty good foot, with her thanking me for what I'd been doing for her the year before, for whatever brought that up

Amen, daughter52. I am always so bright and cheery to my mother. I probably get on her nerves with this false self. I know I get on my own nerves. I would love to talk politics or ethics to my mother, but that's a no go. So we end up talking about the weather or my brother's family or her church. A lot of times the conversation about my brother or church goes negative. I tell her I don't want to talk bad about these things, that it makes me feel bad. But then she goes right back to the negative talking. Sigh. Wouldn't it be wonderful if there was a pill that people could take and see only the sunny side of life? I know I would want a prescription for myself.

Jessiebelle we definitely have the same mother no doubt about it. My mother wants me to go to church though with her. Well hells bells if I went to church with mother the doors would melt shut at the sight of me!!! Mums church friends are a bit like the dolly parton(?) song - "I go to church on a sunday the vows that I make I break them on Monday the rest of the week I do as I please then come sunday morn I pray on my knees"

As such I cannot be doing with them so no offence to you true believers but that's not for me. that ALWAYS ends up as a negative conversation but today its her eyes. She has had a cataract removed in one eyes (both have them but they only do one at a time) and this morning the patch came off. Boy have we been miserable today - she expected to suddenly have 20:20 vision again something she hasnt had for 75 years for heavens sake. negativity rules and now my sone and grandson are here to help me. Son is in bed and asleep cos hes tired!!!!!- its 19:47 here - welcome to my world son you have no idea. Im 62 and have been on the go since 5 am You are 40 and have been on the go since 5am - the difference? I still have another 5 hours to go before I can even think about sleep

My mom has always been very bossy and controlling. Now that she turned 87 she is even worse. I keep having to bail her out from over drafts on her bank account (she pays me back...but still). I stayed with her for 3 months after she had a knee replacement in Oct of 2014. She was ungrateful and mean to me. when I last took her to her primary care Dr. mom was telling the Dr how much she could do for herself. The Dr asked her why I was still there. My mom told her because I keep doing everything. So I decided it was time to go home. She would then call me to come spend the night because she was lonely. She has made enemies of all her old friends with the outspoken mean way she treats people. I live almost an hour away from her and do not plan on spending the night with her at all. My biggest problem with her at the moment is trying to convince her to let me show her a better way to handle her bank account. She just tells me how she has been doing it without my help and doesn't need it now. She spends money like she has it to spend (which she does not). I even asked her Dr to help me get Social Security to let me handle her money. That didn't work. They sent someone out to evaluate her. Of course the few hours they were there no checking problems arose so she was considered able to take care of herself. My only sibling is a younger brother. He said he would have sent her to a home as soon as she needed to recover from the knee surgery and left her there. She will never be welcome to live with me. My personal Dr. wanted me to see a psychiatrist because I could not stop crying. I felt so trapped when I was staying with her...like she was 'sucking the life out of me'. I HAD to leave to save myself!

Its hard to feel close to a dementia patient, despite that you had a close relationship 30 years ago, so for all of you with moms who were always cold and mean - don't let yourself feel like you should change things now, you can't. Mom was once loving, she isn't now. They are not the same person, and their world is so narrow, their conversation so limited! For the past 8 years, the topics of conversation with Mom have been exactly the same, every visit - no deviation except as the years go on, they are much much narrower. At first it was constant complaints about wanting her house and car, and how sorry she feels for herself and pity for my daughter who cannot move out of her state because of custody laws, obsession with her bowels and a lot of "isn't that awful" when she was lucid enough to understand the news. The last five years these are the only topics - ten times a day: blink blink, I need glasses (we explain it is a catarac and six years ago she freaked out and refused to have surgery and now its too late) five minutes later - blink blink, I need glasses, etc ; I feel sorry for Kris because S__ won't let her move (the children are grown but she's still on the topic ); how is your dear husband; how are you, didn't you break your hip? (I broke my ankle 3 months ago but I got 4 phone calls last night asking about my hip); I don't feel good; I never thought this would happen to me, I've always been healthy; I hate it here; I'm depressed; did you have lunch; I haven't seen you in weeks (it was 2 days ago). I feel totally helpless when I visit. I don't know what to say, what to talk about because she can't hear half of it, doesn't understand it and I have to repeat it five minutes later anyway. Thank God Mom is not aware of what she has become. It would devastate her. The worst for us was when she went through a couple of months where she would call several times a day saying it was so awful because my daughter died, or because my brother-in-law died, wasn't true, but she couldn't remember it each time we told her. Poor thing, she can't help it, her mind is gone, it is on a loop of memories, many imagined and those fading every day. Soon she won't know who we are. She no longer recognizes my husband. I feel pity, compassion but she is no longer Mom. She isn't antagonistic to us any more, she is just sad, existing in this awful empty world. But, saying all that, yes, it is hard to relate to her or to feel warmth toward her, she no longer wants to be touched or needs hugs and neither do I. Getting this old with absolutely no joy in life is not a gift, it is a curse for the person and sadness, a sense of loss and hopelessness and confusion for the family, wondering what we are supposed to do, say to make it better to make her happy when we can't. So please, those of you with mothers who never treated you right - you shouldn't be feeling guilty if you only feel a familial obligation.

A propos of this question - the dilemma of lack of affection for the care recipient was identified as a problem by gerontologists at least 30 years ago. In 1985 there was an article in The Gerontologist entitled "Caregiving within Kinship Systems: Is Affection Really Necessary?" The author acknowledged that caregivers often lose (or lack entirely) the emotional connection with the care recipient, and this causes motivation and morale to plummet. His solution - that caregivers should be guided to "reframe" the experience of caregiving as one based in duty and obligation, not affection or closeness. Supposedly that would help caregivers feel better about devoting their lives to someone they can't connect to emotionally. Meh!

If anyone is interested the cite is here: Jarrett, WH—Caregiving within Kinship Systems: Is Affection Really Necessary? 25 (1985), pp. 5–10

Carla, that sounds just like what we are talking about here. I don't so much like the duty and obligation part, because we caregiver types can often feel like we're responsible for the world. One day "they" will probably come up with a personality disorder for people who feel overly responsible. I have a feeling that many caregivers could be poster children for the disorder.

I do think it helps a lot on the caregiving side to try to approach it like a professional when there's no mental connection. That way all the medicine is dispensed and all the meals are served. But it doesn't make life so warm and snuggly for the caregiver. I am envious of the people who have good marriages. They can get the warmth from their spouses. We single/divorced folks don't have a ready supply available from anywhere. Pets are good, but when they die it is terrible. (I'm really having trouble after losing my sweet bunny on Memorial Day.)

Well said Jessie!

Something I realized after writing that is that it may explain why children from emotionally cold homes often become animal lovers. The pets can provide them with a warm connection that they need. Nothing says loving like Fido bounding up to you when you come home, so happy to see you. It's like a big hug.

I too am envious of people who have spouses, or adult children, or close friends that provide some genuine support. It's often the "unencumbered" adult child who becomes responsible for the parent. Geez, if I'd known I'd end up tied down this way anyway, I'd have had kids. Or stayed married. My failed marriage, in retrospect, was so much more enjoyable than this. At least he provided some benefits - someone to talk to, to go to social events with, and someone who took care of me when I was sick. This relationship is all give and no get back. That's the reason for my screamy-faced atavar.

Avatar, that is. Sheesh!!!