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My cousin wants wants to come see my Mom who has dementia and lives with me and my spouse. My mother feels embarrassed she doesn’t remember people and she thinks she looks too bad for people to see her. She welcomes her hospice nurses okay but has expressed that she doesn’t really want visits from anyone other than her immediate family.


My cousin has planned to come see her in few days and how can I politely tell my cousin, who I love, not to visit.

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I find telling the truth works. Tell your cousin that your mom has dementia or that she is ill and doesn't want any visitors. If your cousin really loves your mom she/he will understand.

Just do not let anyone guilt you into anything you or your mom don't want..
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Reply to Shell38314
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How about: "Hi, [cousin's name]. I'm so sorry but I'm afraid my mom is too ill to receive any visitors right now. All visitors outside of me, [spouse's name and any other immediate family members you care to mention] make her feel extremely anxious, so I'm sure you can understand why we aren't able to have any visits at this time. However, if this situation changes, I will let you know. Thank you for caring about mom. I appreciate it so much."
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BobbingWren Dec 29, 2018
Being that closed off will cause relatives and friends to accuse you of isolating your loved one and being abusive.

I have had good luck in using digital technology as a compromise. Having a Skype video chat on my phone in the same house as my mom, and saying "aunt sally is talking to me, want to say hi?" is a great solution. When mom mumbles "no", swears, and wanders around in the background, aunt sally gets a glimpse of the reality and sees that mom no longer wants to talk.

Sometimes, mom does want to talk, has a really good day, and sounds like herself from 20 years ago, mom ends up walking away with my phone for nearly half an hour. Relatives treasure those moments.

My mom cannot handle people coming over, she compulsively starts cleaning and yelling about how filthy the house is and that there are "bugs" everywhere. (The house has one story, concrete floors and is very easy to keep clean.) But telling people not to come over is a problem, so instead I redirect and ask to start with a phonecall or skype and work up to a visit.

Instead of denying contact, I complain to relatives that I have tried to get mom to call or visit them and she is not interested anymore. And then, while on the phone, I ask mom to say hi, and she almost always refuses in a way the relative can hear.

There are three people my mom can stand having come over, and even then we need to work into it. Sometimes they choose to stay outside while I duck into the house to avoid the potential meltdown.
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Just tell her the truth, you did it quite nicely here :)

If she insists, maybe invite her for a short visit but warn her that your mother may not know her or tolerate a lengthy visit. That way the cousin won't be in for any surprises if mom just up and leaves the room.
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Reply to TekkieChikk
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Aging082981 Dec 28, 2018
Thank you Trekkie. I have already explained this to my cousin, who is very understanding. I just feel kinda like I’m between a rock and a hard place. Hopefully it will lol work out and all my worry will be for nothing! Thanks for your reply and input!
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I agree with Tekkie. Tell her you'd love to see her. And that its nice she wants to visit Mom. But you just want to warn her that you never know what kind of mood Mom is in because of the Dementia. So if she doesn't think that would bother her please come. If nothing else you can have a nice visit. When she gets there don't ask Mom to guess who the visitor is. Say, Mom, Mary Ann has come foe a visit.
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Reply to JoAnn29
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Aging082981 Dec 28, 2018
Thanks JoAann! That’s what I’m gonna do. I have told my mom and asked if she’d like to see my cousin( who she hasn’t seen in about 20 years). Her answer depends the hour she answers it. One minute she doesn’t want to see anynone, and says she feels embarrassed and anxious she doesn’t know them and the next hour she says it would be fine to see them. She says she is embarrassed by her memory and the way she looks. She does not remember my cousin at all even though she used to keep up with her birthdays and such.
Thank you for your helpful answer!
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Does your mom have any issue with you having friends over? Could you entertain your cousin in a common area and let your mom decide whether or not she will join you? How would you handle the situation if a friend came to visit?

Of course, your cousin might be disappointed not to see your mother so explain the situation to her ahead of time. I would try to accommodate my mother's request but I wouldn't go so far as to ban all relatives from the home from now on. That doesn't seem like a reasonable thing to ask you to do.
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Aging082981 Dec 28, 2018
Thank you for the advice! I don’t want to deny her to see my Mom, but I don’t want Mom or feel uncomfortable. Even when friends and company come over, or when no one is here Mom does not want to come out of her room except to go to the bathroom. Guess I’ll just play it by ear and see what mood my Mom is in when the day comes. thanks again!
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Wow this is like a page from my life.

I have a son with a type of brain tumor resulting from a TBI at age 4. One of the hardest things for him
to do is have visitors over. He hides in his room because he's scared someone will ask him a question and get angry or tease him when he can't answer. Or be embarrassed if he passes out.

Unfortunately he is unable to sit at a dinner table as people chat and concentrate on using his hands too and finding his mouth without tremors. His brain shuts down once people begin asking each other questions, even if he is not involved with conversation directly.

Many times he has collapsed, gone limp or completely lose his speech ability just by sitting in the lively loud chatty room.

As a result trying to have friends over for my writing group is nearly possible. It's hard to explain to others how delicate the balancing task is.

Do we go ahead and have visitors, and create a medical crisis, stay isolated and create a mental health crisis.

Worse, disconnecting from people risks further abandonment by others.

My father's 80th birthday was this year and 6 generations out travelled for a huge gathering. My son's and I couldn't go. It hurt so deeply and I got criticized by many for not attending.

The same happens when I can't take my turn hosting social functions. How can I when even a babysitter in for 3 hours allows a tv to be slightly to loud for my oldest not realizing how sound can alter his brain function and I get home to a child turned mute for 5 days.

I have learned to share just enough but not get overly detailed. I typically offer a resource for people to read up on aspects if they ever wanted to. In a way I let the written materials do the explaining.

I do take advantage of our patio in good weather to sit and visit while he remains indoors. That has worked well during warm months.

I think the suggestions here in replys are great. In the end you still have to do what's best AND be nurturing towards yourself.
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Grandma1954 Dec 31, 2018
I feel for your son. And for you. You both loose out on so much. Is there any way he could or would wear noise cancelling headphones? Stupid question because I am sure if he would/could you would have tried them. I am sure if your friends know about the extent of the problem they would understand..if not you need new friends!
Best wishes for a peaceful New Year
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It might help your mother to tell her that the visitor knows all about how she is now, but would like to see her because they love what she has meant to them in the past. Your mother doesn't have to do or be anything, except how she is now. It is about being loved, not about putting on a performance. I am sure that this is true, and it might be a lovely thing to say to your mother.
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Reply to MargaretMcKen
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Aging082981 Dec 31, 2018
Lovely advice! Thank you very much! xo
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Can you tell cousin that you would prefer to see her yourself in a restaurant, and you will be coming alone?

Arrange the date far out, late January, or longer?
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Reply to Sendhelp
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By opening your mouth and just telling them.

I had to tell people for 2 years that my DH didn't want company - it made him uncomfortable. I took the calls and sometimes DH took the phone but as often as not, he didn't even want to do that.

It's about the patient, not the visitors. I called his brother when I knew time was growing short - and both his brothers came and wound up visiting with each other, not my husband. I don't think Ray even knew they were in the room as he was already sleeping most of the day. But I thought they should get the chance to say goodbye. Ray was gone within the week.
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Reply to RayLinStephens
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In agreement with
"It is about the patient, not the visitors".

Protecting the wishes, privacy and dignity of the patient is first, imo.

Planning to persuade (or coerce) the patient into having a visitor is wrong, imo.
It would be like saying: "I know you are embarrassed, don't look your best, but the visitor wants......."

Speaking to the cousin (behind patient's back), explaining patient is a betrayal of patient. "Let the visitor know she is embarrassed" does sound all nice, but it is NOT!

Just say "NO".

Forget "polite" if that has failed.
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Reply to Sendhelp
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IDK, we get so many posts from people who feel they have been abandoned by friends and family and I wonder how often that initial urge to isolate themselves played a role in that. As she aged my mom could never figure out why anyone would want to visit either, she felt as though she had nothing to contribute to a conversation and would grumble that she "had" to put up with so and so, but after the visit she was happier and had something new to think about for a few days. I wouldn't twist the arm of anyone who would be really be negatively effected by a visit of invite someone who may react in a less than kind way but sometimes it's just a matter of learning how to accept the new normal and discovering that it isn't as bad as it seems.

I might add, as my mother became more withdrawn the visits were mainly with me, with mom in the room but rarely participating. I think those visits were a great respite for both of us.
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Reply to cwillie
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Sounds like this visit is more about your cousin feeling guilty for not seeing your Mom for 20 yrs. Don't know the circumstances behind why so i don't mean to be a Debbie Downer. For the well being of your Mother & yourself i think you make it clear about not wanting company. Feel sure she'll understand.
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Reply to Georgiagirl
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What to say...
Thank you cousin for wanting to see mom she is not well and requests for visits are denied at this time.
She welcomes, notes, cards and letters.
Sometime you just need to be open and tell them if it hurts their feelings sorry but that is the way it is.
Blessings
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Reply to anonymous567821
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With my parents, who often felt this way, I limited visitors to one hour. Any longer and they could be stressed and tired. I would always have the person say "Hi Mary. It's Brenda.... it's so nice to see you". Hold their hands in yours. Bend down to their level.

They feared having to entertain or keep things going, but they always enjoyed the visit. I was always there anyway, but I was firm when I could see any type of agitation or discomfort.

My stepfather's son and his whole family came to visit once. Too many people!! I didn't know. They visited, told stories, took pictures. When they left, my dad said
"I don't know who those people were, but they seemed very happy to see us."

LOs with dementia won't remember what you said, but they can remember how you made them feel.
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Reply to dejawog
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It just doesn't have to be Dementia people. DHs Aunt was in her mid 70s when her daughter thought is was a good idea to bring her two adult daughters and 6/7 children to visit from NM. Aunt had a 3 bedroom rancher with one bath. One bedroom had been made into a den. Aunt gave up her bed and slept on a pullout chairbed. Kids slept all over the living room. Aunt had RA. It rained so the kids couldn't go outside. She tried to get them to play on the enclosed porch but they kept running in and out. They ran her ragged and daughter didn't see where this was a problem. I know at 69 I wouldn't need an extra 9 people in my house for a week or more.
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Reply to JoAnn29
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Just tell your cousin the truth; mom doesn't want visitors because of XY and Z. The well meaning relatives who are clueless really think it's perfectly fine to drop in for visits whenever they feel like it, regardless of how the patient feels about it. I've told my cousins MANY times that mother is in no shape for visitors, so please don't come by. Thanks, love you, XOXO
The end.
Best of luck!!
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Reply to lealonnie1
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I'd consult your mom to see if she is willing to have a day where people "may" see her once a month- and for a very short visit. 20 minutes is the maximum amount of time- 10 minutes may be enough to avoid tiring her out. If she is willing to have a short visit once a month - so she doesn't feel pressured to see people and "be on" and once her agreement is secured - begin informing everyone, especially your cousin, who I would state that her wishes have changed and her health wouldn't allow a visit at this time.

But I'd start with the cousin first - the sooner, the better. It's a touchy subject for family; especially since she is on hospice so I would explain to the family that she has agreed to a specific day and time to visit - but it is not set in stone that they will see her if she is not up to seeing the person in the flesh.

Ask them for their understanding, that it is not her way of discouraging their well wishes or presence in the home, but visits have gotten to a point that it causes her some distress and that's the last thing anyone wishes to do to her at this time. (If they don't agree to the idea behind that, bring it up later, their emotional feelings, while understandable, doesn't eclipse her needs to have quiet time. )

Agree that all visits can start in the living room - someone will check with her if she is up to seeing their face. If not, tell the visitor thanks for the visit and encourage them to stay a few minutes for coffee or cookies and visit with you both instead of the mother. If she is up to the visit, mission accomplished - and each can part with the idea that whether seen or not, their visit is appreciated.

I'd call each one (those that are inclined to visit in this manner) and express her change in visitation to the home. She cannot prepare for visits the way she once was, and relies on the family to assist her. On days when someone would visit, you can make her look "nice" for the visitor that's coming through.
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Reply to StaceyLM40
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Marcia7321 has mostly said what I was going to post! Since the original post was several days ago AND states the impending visit was days away, hopefully this won't be too late!

Aging082981, since you say you love your cousin, invite her over anyway. At the least, you get to visit each other. If mom chooses not to join you both for some tea and conversation, that's her choice. I would not let mom know about any visits beforehand, that would just give her time to get worked up or angry about it. Perhaps if you and cousin are having a lively, lovely, laughing conversation over tea and cookies, mom might even peek in to see what's up!

You should not have to exclude anyone from visiting, but you also should not force the visit or visitor on mom. Let HER make the first move! Just be sure the visitor understands the rules BEFORE the visit is arranged.

Often if you treat those with dementia (later stages) just as you would a shy toddler, kind of ignore them, they sometimes come out of their shell on their own!
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Reply to disgustedtoo
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Aging082981 Jan 1, 2019
Thanks for your input! We had the visit! My cousin came over and it went just fine, The reason I was so uneasy is because my Mom ,at first, expressed strong displeasure at the idea. That along with the fact that she is pretty much bedbound meant the cousin would go to her room and I didn’t want Mom to feel trapped. The next time I asked if she would like to visit her niece she said “ I guess that would be okay” even though she didn’t remember her.
My cousin was totally understanding and very sweet about the whole thing. Mom was worn out and slept the whole next day since the visit. In the end, I’m so glad they got to see each other and I have no regrets of denying my cousin or pushing my Mom into something she didn’t want. Thanks to you and everybody else for your great advice!
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I would ask you why you felt a need to ask the question (to this forum). In other words, do you feel uneasy, embarrassed, guilty, torn, and/or uncomfortable setting boundaries and/or sharing the truth? If a person is not used to being direct and perhaps defaulting to 'people pleasing' (not that you do or are), it might be emotionally difficult and uncomfortable to be truthful and direct.

Or perhaps you are not sure what is best for your mom, no matter what she may say in any given moment. When dealing with a loved one with dementia, we often have to listen to our own gut / reaction and go from there. I could answer if it were me . . . in your situation. I would spend some time helping 'mom' fix or comb her hair, wash her face or put on a little make up or lipstick - do something so she feels 'pretty' or 'prettier' which will increase her self-esteem in any given moment (doesn't matter that she forgets). You can spend some quality time paying attention to her, which is likely what she needs.
. . . I wonder if your mom would like to speak to this person on the phone 'first' - to hear "I really care about you and would love to see you for a short visit," or ask open-ended questions to engage your mom on the phone.
. . . I would address the embarrassment head on. Talk to her about it. "It happens to all of us" (forgetting, confusion).
. . . give options for / about a visit rather than discuss or set up as a 'yes' or 'no' response to a visit. xxx would like to come over for a few minutes (set the time options). This may not work as it is over-riding her initial stated desires.
. . . if you mom is depressed, address it as best you can with Alz community or social worker or primary health care. Perhaps your mom needs to be on (more?) medication. It sounds to me like she needs to feel better about herself through quality time spent with her and being 110% unconditionally supported.
. . . If the cousin would be fine with coming over and NOT seeing your mom, I would consider that although your mom may feel 'on alert' if she sees or knows someone is there and go on the defensive, not trusting what may happen next (will she come into MY room - uninvited?) which could emotionally overwhelm her. Trust and building trust is important.
. . . Back to the cousin. If she could really come over and not visit with your mom, be sure she is fully informed of the situation and would not go into your mom's room and negate your mom's words and feelings, i.e., I feel embarrassed . . . and the cousin says "oh, there is no need to feel that way." It is important to honor and reflect back to the person what they do feel and say and not try to change it.
. . . perhaps ease into other visitors (like pet therapy) to have another focus. Pets are really good for that. Gena aka lightworkerg
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Reply to TouchMatters
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Just thinking how lucky your Mom is that someone wants to visit. The Church ladies used to visit Mom after Bible study on Weds. When I placed her in Daycare and wanted to space out the 3 days she could afford, Wed was a DC day. They never visited again. Friends never visited. Uncomfortable because she was in my home? When she was at the AL, people would tell me they saw Mom. They had been there to see someone else not Mom. My Mom was a sweet lady who was known for her smile and well liked. Our friends congregated at our house because of Mom. But when she no longer was herself, she was abandon by friends and her Church. Even her sons didn't visit regularly. One is 8 hrs away but the other 1/2 hour. Your Mom should be happy that people want to see her.
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Reply to JoAnn29
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Aging082981 Jan 1, 2019
My Mom and I are very lucky she has people who love her and want to see her! I also feel very blessed that my Mom is never ill tempered like so many others with her same problem. Her nurses and sitters love her and so do I! So sorry about your Mom and thanks for your input!
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