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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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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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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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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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I don't think I could add anything, that hasn't already been said. Visit her on your terms . . .
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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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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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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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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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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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@PeaceCorps1 whether Amy knows it or not she is thinking of her mother and what's in her mothers best interest for her peace and continued contentment. If I end up with dementia and do not want my family to come and visit me then I pray that they will honor my wishes.
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I can "hear" your discouragement, Amy. I hope and pray that you'll find yourself more at peace once you put your decision into action. I'm willing to bet that the times you visit in the future will be much more satisfying for you both. God bless.
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My mother passed away last week after only 6 months of total vascular dementia (she was bedridden and couldn't speak in the end). What I want you to remember is that it's not about YOU. It's about the patient who is suffering from an incurable illness who may or may not be feeling anxious at not remembering you or being able to make coversation. Your mother may be as embarrased as you are. So, you must try to be the bigger person (until your time to be demented comes along) and think about what would make it easier for you when she is gone (which is inevitable). I always made decisions that I knew would comfort me when she passed away, and now I do find a lot of comfort in having been patient and tolerant and trying really hard without knowing how effective my efforts were. It is also worth remembring that it is the disease that you find frustrating NOT the person.
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But this has been a 20 yr illness sasperella, just a step back so they can both get some air is what I think she's saying they need?
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If you feel your Mom is getting good care and visiting so often then don't. At this point it seems like the visits are because you think you should than your Nom wants them. So don't feel like you need to go so often.
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Like "Sandwich" wrote: 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
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AmyGrace, it is good to see that you spent some quality time with your husband and children, so important. Have you contacted Hospice to see if she is eligible for their services? Even if her labs and Xrays have come back normal, she may still have multiple issues that could qualify her for their daily care. that could also help ease any worries about having someone to keep an eye on her, her health; and Hospice will also call you each time they visit and give you an update as long as you ask them to do that; they will.
Even tho your mom has battled anorexia her entire life, remember that so many ALZ patients at that advanced age will lose all desire to eat or drink, it is often times part of their transition into death. it is not painful for them to stop or restrict their eating and drinking. Research shows that when they do stop eating and drinking, their bodies will release endorphins which actually make them feel better physically. At her age and her ALZ, she truly isn't being 'vague', she probably honestly can't describe how she feels. My 90 yr old father fell on 31 March and shattered his right hip so badly that it could not be surgically fixed. 12 hours later he forgot he broke his hip, he thought he was moved to the hospital because he had an asthma attack. He said he was not in pain, he did not feel pain like others would due to the ALZ. Not ALL patients, but so many just don't feel pain, nature's way of protecting them, I guess. He stayed in good spirits, talking, just enjoying the attention of the nurses, but didn't even move around like someone who had a shattered hip only hours before. Do speak to Hospice and they will come around and give your momma an evaluation; your mom's doctor can request Hospice come in for you to evaluate and if your momma is eligible. This could solve a lot of the 'how often to visit' worries you may have as well.
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Yesterday my mom came to my house for the first time in a long time. It makes a two-hour drive for us when she comes here. But I wanted her to see her great-grandchildren.

She had the strangest expression on her face and wanted to go home as soon as we had eaten. I really believe she is happiest in her snug little room at the AL with all of her creature comforts right to hand. I have also noticed that she doesn't really enjoy long-ish outings (2-3 hours). So, I think . The best for now seems to be a short ride with lunch or ice cream.

How often? I now go every other day when we are in PA, which is half the time. And I have no guilty conscience when I don't go because at the end of the day, she doesn't know whether I was there or not. So, a win-win really..
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there are so many wonderful suggestions..
definitely stay away at mealtime...consider less frequent visits
do come when there is some sort of "event", you might enjoy too..
my mother loved to have her hair fixed or nails done(if you do these things)
if I were in your mom's city, I would enjoy being that contact person who visited and kept track of things...good luck
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I struggle with this ~ guilt/obligation vs. self preservation so everyone's replies have been super helpful for me as well. Thank you AmyGrace for posting.
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KDS0125, I think most people are age were raised on guilt, especially women. We were taught that we were supposed to take care of everybody else first. Our own health issues are teaching us that we need to put ourselves on the priority list too, or else we won't be able to be there for ANYBODY! I finally got the message, but have done some permanent damage to my body in the process. I am still working on being more peacefully and accepting of my own limitations, to stop seeing it as being selfish, instead to see it as working in the highest good of everybody who depends on me. There are the times you really need to be there, then there are the times when you know you should take care of yourself and trust that your loved ones are going to survive while you're doing it. The wisdom is in knowing the difference and being at peace with it. Many of us are in the same boat. You aren't alone.
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(((((((amygrace))))))) You said you have health issues yourself. You need to look after you. I have health issues too and have not seen my mother since we moved her the end of January. These past few months, I could not see her. Mother is 103 and I am 77. She is well looked after and in the past few years I have ended up having more contact (by telephone) with the staff of the facilities she has been in, than with her directly. I respond quickly to any concerns they have and promptly provide things she needs when I am informed. Normally I would make the 5 hr. trip 4-5 times a year to visit, but have not been able to this year. The staff know who I am and that I am keeping an eye on mother. Visits with her need to be short for both our sakes. She has BPD and is narcissistic and tires quickly, and the visits are stressful to me which exacerbates my health issues. In fact the life long stress may well have caused them. I always plan things to do just for me when I am there.

Let the guilt go. It is what is called false guilt - not due to you doing anything wrong, but to you fearing you are not living up to the expectations of others. You are there for your mother when needed. Figure out what makes sense to you with regards to visiting and keeping contact with staff. Those who have not walked in your shoes need not make negative comments. Take care
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I agree with getting it down to once a month, which if you are taking her out to dr visits will end up being more. Make the trip a pleasant one for you, perhaps you could drive down in the morning visit her for 15 minutes - take yourself out to lunch or shopping and stop back to drop off snacks before you drive back - that way you have seen her twice at different times in the day - and the shorter visits may be less stressful on her and it would be a more productive trip for you.
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My best friend's mother is a real piece of work. She was never a nice person, very mean to my friend and all of her other children as well. She even called her own grandchild a "chink" - that's right! (He was adopted from Korea). I asked her why she would visit her when this was how she was treated and a total waste of energy as her Mother never appreciated it anyway. She told me & I share it with you: "I do it for myself, so I don't have any regrets." That said, my friend has not visited her Mother in over a year.
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Schedule visits on your timeline. My family and I alternated visits with mom in the nursing home, so we could maintain good care and the nurses never knew when we were coming. As suggested, I would go when there was Bingo and play along, I would do my mother's nails. Eating dinner with her was totally out of the question, she became confused, so I did not visit when they were eating. I like the suggestion that you could find things to do for yourself while you are in her town - pedicure, massage, shopping, etc. You have to arrange your visits around your schedule and the most important thing, take care of yourself!! Good luck. Consider the doctor visits as your visit as well, twice a month or once a month would be enough. Just be sure the nurses know you are checking on her and you can call them as well.
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Agree about varying the time of your visits! Best way to have all the staff see you and know you are watching. You are paying them to take care of her, make sure they are. If you pop in at different times unannounced, you get to see what's really going on, they don't have time to "stage" for your arrival.
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Yes, visit when it is convenient for you. Take thing ]s to her for her confort that you feel she will enjoy.Most of all tell her how much you love her and hug her. We never lose the sense of truly being cared for.
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I don't know how much you enjoy the company of older people in general, but if you are a sociable type of person maybe ask if there are other people that could use a friendly visitor while you are there.
I've found that the place where a friend with dementia lives there are wonderful people that enjoy a few minutes of chatting. The elderly are so often overlooked and ignored that just being
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(sorry - auto-sent).
Just being seen and acknowledged as a human being can lift an older person's mood. Those kind of interactions also don't have have any emotional baggage either. I found that sometimes just being with the older ladies and having tea after a rough visit was a wonderful lift to my spirits (most of them did NOT have dementia, and I can't tell you how delightful it was to be talking to a 99 year old who was sharp as a tack, with a sense of humor).
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I think its great that she feels so comfortable in her surroundings. So many don't and absolutely detest their stay and environment. If she's happy and your visits disrupt her day or cause her distress from her perspective - I would give yourself a well deserved and guilt free rest from the visits.
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