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Thank you for raising this issue. I have similar problems with my 93yr old mom. What compounds this guilt or insecurity about how often I should visit is that I'm 54, was widowed 8 years ago and am raising my 9 and 16 year old boys by myself. I also work full time and am a dept head. It seems like everyone comes first. It's taken the help of a therapist to realize that I was raised through guilt by my well meaning parents, the result being that they all know how to push my buttons. My single older brother has been stepping in more but it's hard on him too when mom whines and complains says she wants to die etc but to the AL staff and her friends she's different. Of course if she had diarrhea from her IBS it's a tragedy and all must suffer her drama. She's pretty healthy except for her ALZ. I've had breast cancer and am overweight and feel like crap. I know I need to take time for me but most of the time it's easier to just keep putting myself dead last on the list. As an older mom I've vowed to my kids that I won't do this to them. Not sure how that will work. Thanks for listening.
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I so relate to the comments about mom being in a routine and not liking it disturbed. I am lucky to live very close. I keep my visits shorts, and they are often predicated on bringing her something she needs. Same as someone said about doing things for her, personal or around the room. I've found that watching TV with her with simple conversation works. How often I visit varies. If it goes more than two weeks, she does notice and gets concerned. More than anything, that told me how often I need to visit for her comfort. I don't maintain any schedule though, I go when I can fit it in. And if I can't visit because I'm sick, I avoid feeling guilty about it. I do what I can.

You don't need to put it on a schedule. Go when you feel up to it. You might skip two weeks, then see her for two weeks, whatever works for you. See how she does with it, and how you do with it. It's different when you go because you want to, not out of guilt.
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My loved one (cousin) really doesn't recall if she last saw me the day before, the week before or longer. It wouldn't matter if I visited every day. So, I go when I can and make it a pleasant visit of no more than 30 minutes.

I always take something to make her smile, whether it's a new cat photo for her room, a new shiny necklace or a t-shirt with a picture on it. She's so surprised. I usually take a picture or two to hang in her room, though, I doubt she ever looks at them. But, the staff does and I want them to know who her family is.

Plus, I think that going at least once per month is good so you keep an eye on her mental and physical state. Sometimes my accessment of how she's doing is different from the staff and I have to talk it over and discuss with the doctor.

I wouldn't feel bad if I didn't visit all the time. Having a person with dementia is a huge responsibility and we all handle it in our way.
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Today I stopped in on my way north (camping with hubby and dogs). I brought her ice cream and snacks. I got there at lunchtime and expected she would be in the dining room. I found her sound asleep in the chair in her room. At first I thought she was dead, she is so pale and frail now. When she woke up she said she didn't feel well and refused to go to lunch (had also skipped breakfast - which is one of the reasons she is so weak and pale - she doesn't eat or drink and no one can force her to). I visited for about 10 minutes but she wasn't really interested, asked me how my brother-in-law is (she thought I was my sister). I left and spoke with the nurse and they fixed a tray for her and an aide took it to her. I doubt she ate anything. I had a nice chat, explaining Mom's lifelong anorexia and failure to drink and how she hides food at meals. She said they had given her a tylenol that morning and they couldn't figure out what is wrong with her because she is so vague about it. They said she had diarrhea so it was my opportunity to explain she ruined her bowels with laxatives, and now if she is slightly upset she has a problem. I made sure they knew I was taking her to the doctor next week, but I think her problem is simply that she is old and worn out. So, we will see what the doc says, but six months ago, all her blood tests came out normal, as did her EKG.
Thanks everyone for your advice. I will visit once in a while to bring food, take her to appointments. I just hope she doesn't become incapacitated and we have to move her again. I don't want to see her bedridden and a vegetable. By the way she looks though, I have the feeling she will not be with us much longer, which at this point would be a blessing for her to feel no physical or mental anguish.
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I'm in a similar situation. In my case, there are still some good days when the visits go well, but there have been times when I shouldn't have gone. I like the idea of cutting back -- try it every other week. See what happens with her and you both. Just don't feel guilty. Sounds like you've done all you could.

But the suggestion of keeping a presence at the NH is a good one. I have someone who comes out 1-2x a week and then I try to stop by once every week or two. Often they need an advocate to make sure things are going well. Like the commenter said, the NH knows who gets visitors and who doesn't. That can be important.
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I don't think I could add anything, that hasn't already been said. Visit her on your terms . . .
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It seems to me that you are going mostly for your own benefit - out of love/concern/caring; or maybe out of obligation; or maybe out of guilt.
But your mom is not directly benefiting from your visits - it gets in her way of her reassuring routines and of her connections with the friends she has made. It agitates her and makes things more difficult.

So, it makes sense to reduce your visits. Maybe only visit for a short time much less frequently - and not at mealtime. Or not go at all.
Or... as ADCaregivers said - you can have another person visit to make sure things are going well and make sure the staff is aware that she is being cared for. I agree that the caregiving stays at a better level if the facility and staff knows she has some visitor(s) that pay attention to the level of care.

But it does not have to be you - especially since it distresses your mom and the emotional and physical cost to you and your health is very high.
She is being cared for already. You need to make sure you are being cared for as well.
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All you can do is what lets you sleep at night.
I feel your pain because I am constantly worrying over that problem myself.

I think we get caught up in what OTHER people might expect us to do based on how they think it ought to be handled. Like what will the nurses think if I'm not there, or what will so-an-so say if I only visit every 6 weeks?

The answer is: who cares. You know you and your mom best. Only you can come up with what works. I am not a person who can sit silently in a room with someone who doesn't want me there, or with someone who is disrupted by me.

My mother was much the same as she was transitioning into a deeper stage of dementia. Around that time she was moved off the skilled nursing unit to the secure memory care unit. It's very quiet there and mom likes it that way. She just got moved into a single room but I haven't been to see her yet. People who don't understand will think ill of me, but so be it. Lots of work hours and lots of kids' activities and life obligations to take care of eats up my free time.

Mom was always happy sitting in her house, in the dark, all alone. Even before dementia. They removed her goals of participating in activities recently. She would make such a stink when they tried to involve her.

Now that I am official court appointed guardian, I will visit her monthly and fill out the wellbeing report to the court. Problem solved.
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I can relate. My 87 yo mother (with dementia) lives in her own apartment (refuses AL) and has a part-time caregiver. I go over every 2-3 weeks to take care of her meds, groceries, and try to find bills that may have come in and she has hidden someplace, all the while claiming she never had any bills.

I am digressing...anyhow, last months I was there for 2 hours and when I got ready to leave she demanded to know why I didn't wake her up so we could visit! I can't talk to her anymore because everything is a constant repetition. This week she asked me when I was coming and I had been there a week before. (It takes most of the day to make the trip, take care of her business and visit.)

All I can say is do what you feel comfortable with and I wish you and all the other caregivers well.
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Skip the meal time but take her favorite ice cream when you go. Talk calmly to her even if it is just about the weather or her childhood. Ask what she did that morning. Maybe call ahead to see if there were any "events" that the care givers can tell you about so you know what to ask about. When she show signs of being tired, tell her that you will be back and that you love her then leave. If she tells you the same thing repeatedly, it is important to her. Ask questions about it as though you have never heard it before. You will both enjoy the visit much more... especially if there is ice cream involved!
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My FIL is in a memory care facility. We visited him at lunch time and he wouldn't eat the main course; did eat soup and ice cream though. We aren't sure if we were a distraction or just what; we did sit at a different table so that could also add to the situation. The family will be having lunch with him on Father's Day so we will see how that goes. We may have to forego eating meals with him and just visit in between meals.
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My Mom had always been rather difficult to get along with, but now that she has Alzheimer's we are close and I have a much better understanding of her as she lets out more and more about herself that she had kept secret. It has provided real insight of her previous behavior and actions.

I now visit Mom at least twice a week. I take her cookies, candy, treats. We have coffee and cookies during the visit and generally work on a jigsaw puzzle to keep her mind engaged. I bring her fresh flowers once a week. I have taken my laptop to show her pictures of family reunions from years gone by. Sometimes I give her facials and a manicure or shampoo her hair and give her a scalp massage. Anything to make her feel special. I try to bring meals that I know she will enjoy and we share them with pretty tableware, napkins, etc.

Just remember what you Mother's likes are, and try to provide those things. Keep in mind that Dementia changes peoples personalities. When Mom gets cranky, I just laugh it off and joke about it. A lot of times she will laugh in return.

Good luck and best wishes. There are thousands of people sharing what you are going through. You are by no means alone.
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1.....I can't believe she's 100, dementia and living in assisted living. 2......my mom is 90, in alz/dementia facility and struggle with this also. Not sure she knows who I am sometimes at least at first and doesn't talk. She was my everything years ago before this disease took her. She is only about 20 minutes away but I am hardly ever going that direction. I visit about once every other week to check on her and the nurses are very good at contacting with certain needs or her hospice nurse and I keep in contact. I agree that if she has a routine and seems to be happy when you are not there then cut your visits back. I use to go so much more often but that was when she was better and could communicate but would still only stay 20 minutes or so. Like others have said, they don't even remember you came or where you came from. If it upsets her (or you) that you are there caregiving is hard enough without the added stress of visiting/driving all that way to be constantly berated for something. I would go when you can and check to see that she's being taken care of properly then let it go. After all, that's what you are paying the AL place for. Good Luck and God Bless.
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I've been wrestling with this situation for at least two months. First it was very frequent visits at the NH then I tapered off. It was a new place and it's easier for all if she adjusts at her own pace. My Mom also has ALZ so sometimes she knows me, sometimes she does, sometimes, she's asleep. When I visit, it's never the same day or time. Based on some of the previous responses, you're on the right track.
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In our case we scaled it back to once a month. Mom is much happier when we are not there. (Always was negative and complained - as you say your Mom does.) We stop in and drop of the things she normally needs or likes to have. Usually she does not even know where the things came from. It's ok. We know she is happy without us there constantly and she does not act out as often as she did when we attended regular visits with her. Our health is actually better with this schedule also. Best wishes.
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My dear, you sound like me. You already have a good plan. You just need permission and you have it!! When my mom went into the NH last year I decided she needed to settle into her new normal and I needed to settle into mine. My normal includes my life and outside interests. Hers includes her world in the facility and visits from family. I volunteer as a helper at BINGO every week so I visit her but she sees me helping and visiting all the other residents. We have a great time and I don't feel pulled by her in any way like I do when I am alone. Conversations aren't always easy one on one and this way there is no pressure and it is fun. I take her to appointments and occasionally take her out for a walk or some other outing. My sister likes to go several times a week. This is right for her. I regularly go once a week and anything else is when it fits for both of us. It has to be right for you! Know she is well cared for there and that you have the permission you need to change what feels like an obligation.
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I'd suggest once a month visits. I would not put a time limit on them as if satisfying a quota. Half hour, five minutes, whatever. If she won't remember anyway, you're the one stressing about it, not her, and that is natural.

This is not an easy situation for you. Take care of yourself.

Grace + Peace,

Bob
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My significant other is in a nursing home in Chicago in a very bad neighborhood, about 40 miles away -- not my choice, but out of my hands. I am only able to get in to see him every other Sunday morning. It makes me sad, but I don't think he notices. In fact he often thinks that I live there with him and asks where I am, thinking I'm on the premises. Every other week works okay, but I would like him to be closer to me. Bring candy and flowers for the nurses at the desk when you visit and be sure to thank them for taking good care of your Mom. They are overworked and underpaid.
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I would go occasionally, anyway ------- this tis to prevent elder abuse!!!!
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I would go when it suited me. Or stop going altogether. These are the days of your life too. She sounds more irritated by your visits than pleased in any way. Get someone in the area to check in on her maybe if you are concerned but certainly don't beat your self up over not going or feel guilty.
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stop going.
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ADCaregivers: EXCELLENT advice!
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AmyGrace, This is such a difficult position to be in. Eve when we know in our heads that ti's the dementia stealing our loved one away. We still want their approval and if we don't go, we feel we don't deserve that approval.
But enough already. You need to take care of yourself and an 80 mile round trip is not good for you every week. Rotate with your sister. You go whe you need to take her for an appointment once a month and she will go, again for a reason or an event once each month and see how that works. Feel better. You have done more than everything you could for her.
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Calling and writing letters or cards to your mom about happy family memories may be another less difficult way to "visit" in between actual visits.
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I agree that visiting @ meal time should be avoided. IMO, there are two other important issues here. One is guilt about visiting/not visiting your mother. I believe our society has too many beliefs about how we are supposed to treat our aging parents. These beliefs seem to skip over the fact that many parents are extremely difficult to deal with as they age or as dementia sets.
Clearly, AmyGrace is doing what she "should" with regards to visiting her mother. But these visits are resulting in pain and frustration for her. Thus I agree with other writers that limiting her visits might be a good idea for her own well-being.
BUT, the mother is in a home. Therefore, I believe in the importance of regular visits to ensure that her mother is being cared for. Staff know whose family visits and whose don't. If I were AmyGrace, I would find a reliable and reputable person to visit her mother every week or ten days. It could be a social worker, a retired nurse or teacher, it just needs to be someone reliable who is also observant. This person should prepare a short written report or email to AmyGrace about what she observed that day. This person could also bring snacks or whatever the mother likes. With a smart phone, she could take a photo of AmyGrace's mother each visit. This would be proof that she visited and the staff would be aware that someone is watching AmyGrace's mother.
Of course, this person would need to be paid a reasonable rate. A local church or social services agency could help you find such a person.
Perhaps some of you will think that this option is wacky. But I believe it protects both AmyGrace from her mother's behavior and protects her mother from a potential lack of care in the nursing home.
I had a mother that was impossible to please. Nothing my father or I did ever pleased her. So we paid my aunt, who my mother adored, to take her to all types of appointments. It reduced the pain and stress for my father, who cared for her until she died.
In closing, guilt is not useful as a basis for behavior because the behavior is not heartfelt or authentic, but just guilt driven. All the best to you AmyGrace
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AmyGrace, you have received excellent advice from the others already. I am just reinforcing what they have written. Also Babalou's advice to incorporate something for YOU that you enjoy during the trip is a wonderful tip (we usually hit a produce market and shop around or do something fun on the way home). I drive one hour to my dad's care center and I try to keep our visits as short as possible for a number of reasons. My visits are mostly for scheduled doctor visits or for those 'must be there' things. Like many others, my father will repeat everything 40 times over in 20 minutes, not remembering that he just asked the same thing repeatedly. He is also a very disagreeable person, loud, demanding, obnoxious, rude, hyper manic, hyper sexual, narcissist, and is 90 years old bed-ridden. His behavior has not changed due to ALZ; the ALZ has only amplified his normal behavior. So he is not a pleasant person to visit or be around. Most of the patients don't know when you were there last or if you walked in every 10 minutes, to them it is the first time they have seen you, they just don't have a concept of time. Unless it is essential that you be there on a certain schedule, visit when YOU want and for as long as YOU want. As long as you are comfortable with your mom's environment, then take care of YOU first. The facility will make sure your mom has a good diet, snacks, food. But only visit when you feel like making the trip. Making those 'out of responsibility' trips with zero gratitude in return can put a lot of stress on you and your family. And do please see a doctor for yourself if you find yourself becoming more and more stressed. Caregivers and family members need attention, too. Don't let any other family member or well-meaning friends dictate to you when you should visit or for how long. Don't visit for appearance's sake. Some patients just do better with little or no family contact. Some patients get agitated when/after you leave which causes a lot of extra work for the staff. Do what you think is best for YOU. Your momma is being taken care of. Don't let guilt ever rule you. My best to you and pls continue to post and let us know how you are doing and how your visit schedules are coming along. We CARE.
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When my dad first went into NH I would visit every other day, but life happens and some days I would miss. He doesn't remember when I was in last, but I am visiting now about 2 days aweek, due to "life". He knows me, at least I think he does, but he doesn't talk in the present. I had a friend who visited her dad every day for 3 or 4 hours and most times he was not awake. She did it to make her feel better and she was afraid that IF he woke up he would be "alone". Everyone is different in how they feel, but you do what you need to do to make yourself feel better. Even if you only stay that 1/2 hour, do it when you might not disrupt her routine of the meal time. and if she don't want you to stay, visit with another person that maybe would enjoy your company that doesn't get many visitors. at least you brighten someone days even if for a little bit until they forget.
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Since visits appear to be more to ease your conscience and sense of duty, rather than to please your mom, I say do what makes YOU happy and comfortable. Try tot he every 2 week scenario and if mom still doesn't seem to appreciate seeing you, go to every month. Remember, nothing lasts forever. Good luck
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I visited Mom yesterday, and she was reading the newspaper. She yelled at me that she just started, and kept on reading. So I put her laundry away, and left. No sense trying to argue with her, the mind is now in a different mindset. I feel obligated to visit and do her laundry, it is not out of love, I don't ever remember ever getting a hug from her, only criticism and now the nurses hear it too. She knows everything, but knows nothing. She has a phone, but never calls me. She can be a really sweet little old lady to the church visitors, and old street neighbours, but to me she is simply cold. So, I have decided the only way she cannot jerk my chain, is to go in, put the laundry away, and leave. It is so bad that I now try to time it that she is in the dining room, so I don't have to listen to her whining. I have no guilt whatsoever, her needs are met, I don't think she cares one way or the other if she sees me or my brother. Her world is now the LTC facility she lives in, and trying to manipulate the PSW's.
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If your mom's quality of life is better when you don't visit, then don't visit. There is nothing to feel guilty about. If you feel the facility needs someone there to make sure they are taking good care of her, then hire someone in the area to check on her, maybe once a month. Send her cards and photos if you think she would like to see them.
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