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.
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
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!
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!
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.
The end.
Best of luck!!
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.
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
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.
"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.
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.
Arrange the date far out, late January, or longer?
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.
Best wishes for a peaceful New Year
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.
Thank you for your helpful answer!
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.
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.
Just do not let anyone guilt you into anything you or your mom don't want..