How to know if a person with dementia really only remembers me when I am visiting them in the nursing home?

My husband is in care home but unfortunately since suffering a bad burn ( which we never got to the bottom off ) has lost his speech ,but he can say my name, and knows I’ve come to see him when I walk in to the lounge, I still find it very distressing having looked after him myself for ten years, have discussed bringing him home , but as I am in my late 80s would need to have live in night carer , havnt got the room for that, but I do go up 3to4 times a week shave him and cut his nails still feel guilty at leaving him

Yes it is not only common but usual - their temporal sense is gone - they think you haven't been for a while when it is several times a week or if you are away due to illness they may refer to 'what we talked about yesterday' & you never know

Visit when you can but don't feel guilty if you skip a day & DON'T VISIT WHEN YOU ARE SICK because the whole place will get it & spread it - also make your dr's app'ts when you can & do not put them off because 'oh that's the day I usually visit John'

Most residents in a NH are content because they are interacting with staff & each other - my mom did 10 activities a week plus religious services & didn't have to even put a coat on to go outside

I hope you can do what’s right for you and ignore what others say. They may be telling you to visit less to make themselves feel less guilty. I visited my Mom almost every day FOR ME and I’m so glad I did. No regrets. If it’s hurting your health or family of course you have to make adjustments. Every situation is different but spending afternoons with my Mom kept MY anxiety down. And to the ones who say they don’t remember us or our visits, who cares. WE always remember and can keep them company for a while. Just my experience.

My feeling is, never underestimate what memories are retained in a person with dementia. You just don't know. Since your visits are pleasant for both of you, keep visiting but don't feel guilty on the days you don't visit. I feel guilty, too, but as soon as I take my coat off and my visit with mom begins, any guilt I felt is gone.

I share very little about my visits with my mom with a few sibs. One in particular, when it was time to leave she didn't want me to leave. I asked the NH staff to help with the transition. I asked my brother how she was when he visited later that day. Told him she was upset that I was leaving. He said, "She has dementia. She won't remember. It's not going to change."

A few days later she asked me when I was coming back. I told her either tomorrow or the next day. I came back the next day and she said, "Well! You said you'd be back tomorrow or the next day, and here you are! And you always bring food." And those two statements are true. Yesterday during my visit she said, "You get the record for the longest visits. You can stay the night if you want. But you sound like you want to go home tonight. It's been a nice day, and I enjoyed it. You make me feel happy when you come." I usually stay 3-4 hours. Her conversations with me are very different than with others, I am sure.

I don't have a car and have to rely on rides from friends to the NH. I do feel bad not being there for two, and sometimes three days. But when I'm visiting with my mom, she is visibly and verbally happy when I do come.

Her memory is pretty bad but our conversation is pretty fluid and, more than with others. I never underestimate what she remembers but can't articulate.

CSH1944;
There are many great responses here! It's great that you visit and you both enjoy the time together. It is about the time together that is important. He may or may not remember, short term memory usually is what goes first, but what one person retains or not is hard to know. The key is that you both ENJOY your visits and YOU remember!

I think one person's suggestion about saying you are going to check on something, and will see you again shortly is great! It doesn't have that finality to it, and may help him not be sad when you have to leave. Going to the restroom would be another good exit excuse. Suggest he ask for a cup of tea or coffee and you'll be right back! The staff should know how to distract and refocus him on something else.

It does sound like the other family members were trying to make you feel better/less guilty about not visiting more often, but that response clearly was lacking in tact! Let what others say fall by the wayside and do what you feel is best. You may want to visit more often, but when you cannot you should not feel guilty about it either. It isn't a game where we are trying to rack up points. Many people don't visit at all, or infrequently, sadly. He's not your father, but clearly you care about him, and so you should continue to visit when you can and enjoy what time you have left with him.

There was another question posed in this email about telling someone not to visit, as mom with dementia did not want visitors. Isolation is bad for anyone, but especially bad for dementia! The more visitors the better! So long as he welcomes you, keep on visiting!

Now as for the other situation - the resemblance to your mother may trigger something in him, however you did say that he started this after your mom passed and that he seems to know the difference between you both. Does he really? How long before having to move to NH did his dementia symptoms appear? The very early stages are not easy to detect and many can actually manage to skirt around the problems they have so others do not notice. Mom was still able to live by herself for a while after I found her heading down this path, but sometimes she would think my daughter was a cousin from long ago (wish I had pictures of this woman to see the resemblance), other times she knows who she is. I showed her a picture taken recently of the three of us. She recognized herself, but asked who the other two girls were... Huh? Yet she knows who I am when I go there. Memories are all jumbled up, some forgotten, some mixed up with other memories, some relatively clear. The repetition I have explained to others as like when a needle is stuck on a scratched record - it repeats over and over, but a little push moves it along... sometimes to the next scratch!

When some relatives recently visited, they asked about my brother - she tells them 'oh yeah, he comes all the time.' I cannot even get him to respond to text messages and in asking staff, I don't think he's been there in months! Last time I know he was there was Christmas 2017 and one macular degeneration treatment trip 4 months ago. Visits can help reinforce memories some too - while doing Christmas cards with her, she questioned one brother's wife name and the other brother's kids names - who are they? Married? Since when? It'd be nice to know! Kids? Since when? It would be nice to know! They are in college and she used to dote on them all the time they were growing up.

So, in the end the decision is really yours. So long as you can laugh off his "advances" and enjoy each others company, visit as often as you can. Certainly don't feel guilty that you cannot go more often - what you do now is plenty! If he keeps pressing you to marry, try brushing it off saying you are already married (even if you are not), or lightly say you'll think about it but you're too young right now! There are many little white lies one can come up with. Maybe you can find that special woman in his NH and play match-maker!

As others have stated, each dementia case is different. My girlfriend's husband had to go to a lock down memory care facility. We had been friends since 1960. He would remember me from the 60's and 70's One time he asked me if I still lived on Strawberry Drive. I moved there in 1977 and left in 1985. I just told him I sure did. There was no reason to tell him about my divorce from his buddy and my moving to a different town.

I went at different times because I believe the more people pop in and out the better off the loved one is. I would always call his wife and let her know how he was doing. She was there every day, but I would call her anyway.

I guess I haven't answered your question. How can anyone know what is in the mind of another person.

That must be very disconcerting for you.

If you always were in the habit of laughing off his "proposal" as if it were a sort-of compliment (slightly off-colour, I'd generally think, but never mind that), and this has become a little private verbal ritual between the two of you, and you've never ever felt in the least uncomfortable about it, then I should treat it as a quirk and continue as you were.

Having said that. This is your step-dad we're talking about, then. So... was he perhaps already a bit strange all those years ago when your mother died? Was he joking? Because I can't offhand think of anyone who would not think his suggestion either eccentric at the very least or else in terribly bad taste.

Hi CH1944. My mom has been in memory care only since this August. I had such a hard time realizing this was her new address and not mine, she lived with me for five years. I too wanted to be there all the time because I missed her. It was just the two of us, my sibling lives on the opposite coast. After a few weeks she adjusted very well and wasn’t lonely anymore as I was also working full-time.
After awhile I realized through our conversations she didn’t remember when I was there last but always recognized me and enjoyed being there and liked being part of her new neighborhood. This helped me tremendously in not feeling guilty being there. I spaced out our visits and each visit after was great for both of us.
My motto for me is when I walk through her doors it’s her world. When I walk out I’m back in my world. It has helped my mind and health.
Sometimes I visit more often and sometimes I don’t. You do what is right for you. 💛

Thank you to everyone for replying. The reason that I feel concerned about visiting my relative in a nursing home is because he continues to talk about the two of us as if we are a couple. Years ago when my mother died he asked me to marry him as if I would just take over where Mom left off. He was her husband but not my father and I was an adult and out on my own when they met. I just laugh about his comments now because I know it's silly,but I wonder if my visits may actually upset him.
I guess it really doesn't matter, but it surprises me that he still keeps on about it.

Well, I would be very suspicious of a family member that is telling other family members not to visit because the father does not remember their visit.

One: It is a cruel thing to say.

Two: Pehaps they have an agenda. It is far easier to commit elder fraud when and elder is isolated.

Please continue to visit, if you wish to visit.

When you take care of your loved one, the staff will take better care of them. We have made friends with the staff and they can often tell me what is going on since my mom may not remember details the same way as they really are. Go for the staff, too. It will help them give their best.

First off, I expect your family member told you that in response to your expressing feelings of guilt about not visiting more often, yes? The remark to the effect of "don't worry about it, he doesn't remember you when you're not here anyway" wasn't the most gracious way of putting it; but it was intended to make you feel better about not doing more. I should take it as it was intended if I were you.

So there's that; but then I'm not sure what else you're asking. Do you want to know if you're "wasting" the time you spend with your relative? Do you want permission not to visit him, if you find it sad and stressful?

The responses you've already had do give you the best answers. You're not wasting your time. He does benefit from your visits. He probably doesn't remember your visits, let alone look forward to them, but it doesn't matter - while you're there, you are enriching his quality of life. It all counts.

So feel better about how important your contribution is, because it *is* important. But also feel better about how essential it is to your relative's routine welfare, which is to say not essential at all, and visit just as frequently as suits you.

Each and every Alzhiemer patient is unique & different from another!There are no two people alike suffering from Alzhiemers.There are many changes a person goes through!
My sister is 74 yrs old & has had the disease for 6 years.
In her early stage I had to place her in a nursing home because she lived by herself after her hubby passed!
She would forget to eat,or thought she had eaten.She smoked two cartons of cig. every two weeks.she weighed 70 lbs when I had her placed.She was never that small when she was a teen. She started wandering late at night ,sometime in the day.She never really knew where she was going.In the end she is in a nursing home contented & happy! She knows who I am ,but not as her sister.Just when you think she has forgotten a family member,she ask where her brother is.There are days she can’t find her glasses or her walker- other days she has put her dentures somewhere & has no teeth in her mouth!
when I visit I tell her that I am her sister - her response is
Really? Then she laughs.It takes me half an hour to drive to visit with her & after 10 minutes she asks when I’m leaving!
I take it in stride.My hubby & I are the only ones that visit,
she has no family & her inlaws & two step children have
forgotten all about her.The nursing staff are just so good to her & I can’t ask for anything more! You have to be trained in that health profession - I am not ! My sister thinks I am bossy! LOL I probably am ! Only because she would never listen! She was the bossy one being the oldest & having to conted with her sister & brother who are twins being 5 years younger!😊
Now she cokes on her food ,so they have put her on a specail diet of soft foods.She no longer feeds herself unless she uses her hands.It is a terrible disease .I miss the “ old sister”who we could reminise & laugh at our childhood together- but love my sister the way she now!💕
Love your loved ones & tell them that each time you visit.💕

It is well known that people, like animals, live longer when they are loved and comfortable. Memory is secondary to both love and comfort during the advanced stage of dementia. Furthermore, as two Norwegian sisters, one a writer and one a neuropsychologist, Hilde Ostby  & Ylva Ostby, point out in "Adventures in Memory: The Science and Secrets of Remembering and Forgetting" (Greystone Books, 2018), memory is a dynamic, creative force with both an objective (factual) side and a subjective (feeling) side. People with advanced dementia, moving into the experience of dying will often not know the name or place in the family of the person in front of them. However, they will be deeply aware that they are not forgotten, but still deeply loved.

Yes, do continue to visit.  You are seeing with your own eyes that the patient is happy when you are there...When you are ready to leave, say, "I am going down the hall to check on your menu for tomorrow's food.  I'll be back."  That will eliminate the sadness you have witnessed when leaving the patient.  And, as you WILL be back, you would not be lying...Short term memory will be erased and patient and you will be happy.
Grace + Peace,
Bob

It appears to be very common. I had a friend who was diagnosed in the summer and things moved very quickly in her case. Zero short term memory, which led to a lot of repeating. But while she still could carry on some semblance of a conversion, she did state she " had nobody, all her immediate family had passed and nobody even knows she's in AL." I promised her I would never turn my back on her, visited frequently as I lived nearby. She recognized me every time, except once , even when things got really bad. She mercifully passed in early November , I have no regrets. Some of her friends kept saying they " were going to visit" but never got to it even though they also were close by. So do what you think is best, I feel at peace knowing I kept my promise to her.

It is my observation that some with progressive Alz have a very short memory of current or recent events, but will remember childhood and/or young adult memories as if they were recent events.

That's a good question, and may be true that they indeed do forget. My father was so happy to see us when we got there, but soon before we were to leave, he got angry....but then the next morning when we returned it was like we never left in the first place, and he was back to his happy old self.

I live in Vermont, and my mom is in a facility in Florida. I visit her once a month and call just about every day. The staff at the facility said that Mom thinks she never receives any calls from family. My siblings and sons all call her as well. So, your family member may be forgetting that you have visited; however, the time that you are there gives him something he would not have if you weren’t there. Enjoy the moment. That’s all we can do with our loved ones who suffer this terrible affliction.

I actually cherish the time I spend with my LO IN THE MOMENT THAT I’M THERE.
Whether or not she remembers anything about each visit means very little to me.
She continues to react with her typical snappy, sarcastic sense of humor, and I give it right back, and I know, in that moment, that we’re BOTH BENEFITING from our interaction.
Part of the tragedy of dementia is that each victim reacts in a slightly different way, depending on his or her original personality and emotional state and how they have adjusted and are reacting to current circumstances.
Guilt about going often enough for visits most likely benefits neither the visitor nor the person being visited.
I have the good fortune to be physically near enough to run in for brief visits often during the week. I sometimes notice some vague suggestions that some things still seem to linger in my LO’s thoughts, whether as real memories or not. When they are enough to keep conversation going, I’m happy about them.
When not, I think of something else to chat about and go with that.
The one certain thing is that love shared between us is definitely real. She always tells me to “Come Again!”.

My granny knew that she was being loved, probably had no idea who I was but knew that she felt loved.

One time I was visiting with my stepmom and granny (step moms mother), we three were sitting at a table and granny looked at me so sad and said nadia never visits me anymore. She knew she had a daughter but couldn't recognize her. I am pretty sure she thought I was my mom, I look alot like her when she was young.

Go as often as you can and know that the love you give is more important than the name behind it.

I was an in-home caregiver for a dear sweet lady with dementia, probably Alzheimer's, for over a year. She had lots of friends and visitors. She always greeted them graciously and enthusiastically and asked them open, leading questions like, "how've you been, how're the kids, what have yoi been doing," and slipped easily into the framework of whatever they told her, joking and laughing where appropriate and expressing sympathy as needed. Sometimes when her charmed guests left I would ask who that was and she would say, quite honestly, "i haven't the slightest idea."
But she was cultured, dignified and above all, as I said, gracious, and she would never have let on for a moment that she no longer remembered these dear friends who loved her so deeply. They would have been devastated hsd they known! So we smiled and served soda and cookies and chatted them up like the old, dear friends they'd been, right up to the end. It's what she would have wanted.
What else would you do? What else can you do,? It's how she wanted it. It was how she ruled her benevolent kingdom, and we who served her loved her for it and were her willing subjects.

I know that my LO doesn't remember me any longer or anyone for that matter, but, I still visit because in the moment that I'm there, she can sense that a person with loving eyes, loving touch and loving words is there comforting her.....It's all about what's happening in the moment. I hope that it somehow reaches her subconscious...and that I'm still in there.

Your relative was awkward in telling you to not feel guilty about your visiting schedule because "he forgets anyway". I think.they just meant to say don't feel guilty if you can't come. You are doing what you can do and that's all anyone can ask of you.
I read on this forum that guilt is for people who are doing something wrong. Lose the guilt. You are doing great.

Absolutely go visit. The moments of happiness keep him going, even if he doesn't remember, but I suspect he remembers you because you visit often.

Long time ago I remember reading about a husband who use to go to the Memory Care to have lunch with his wife. Someone asked him why does he go since his wife no longer knows who he is.... the husband replied that he goes because he still knows who she is.

What does it matter if he doesn’t remember the visit? There is a saying somewhere along the lines of
Yesterday is gone, we are not promised tomorrow, all we have is today. To me as it relates to your LO you should just enjoy the visits you have and not worry about others opinions.
I wonder if he would still know you if you stopped visiting? I think the frequent visits helps them to hang onto names and faces. It seems that way to me with my aunt. Don’t worry if you can’t go more often but enjoy the times you do. The happy feelings he has to be with you are good for his spirit and you will feel better for having visited him.

What difference does it make if he can't remember how often you visit, he still enjoys the time you are there and that's the whole point anyway!

I don’t think anyone can know definitively what a person with dementia knows or doesn’t know. How can anyone say what lingers in the mind of another, even a mind ravaged by disease? There are memories and imprints put in place throughout our lives, I don’t find it a stretch at all to believe that people with dementia have glimpses of those memories. Your relative loves your visits, that’s reason enough to go. It is sad, undeniably so, but it may be the time you’re appreciated the most. He’s blessed to have you