My MIL's Alzheimer's dementia is advancing. She is at the point where she is not consistently recognizing her children. She is having more agitation when she sundowns, and it seems to be worse when a family member has visited. We keep the visits very short and to only or one two people, but they seem to confuse her and create anxiety. It's at the point where she has to be given Ativan to calm her or she will be in a high state of anxiety with un-redirectable reactions for hours, which is stressful for her and her caregivers.

Has anyone ever come to a point where they had to discontinue visits to help reduce their LO's anxiety and stress reactions?

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I'm kind of entering this phase.

While I have been distancing myself from my mother off and on for many years (sometimes going almost a year between even SPEAKING to her)..I have discovered that she doesn't really care about me at all.

It's a bitter pill to swallow, and now she is showing signs of dementia (she covers pretty well, but is quickly losing the ability to cover her remarks)..I know there is no hope for a better relationship.

Her comments to me range from benign to unbelievably unkind and horrific. When I chose to visit her, I KNOW I have to cut and run the first nasty/racist/cruel words out of her mouth.

People who see her put on her 'darling old lady act' do not believe she can do and say the things she does. My sibs don't bother to call or visit, maybe once a quarter. I am the child who keeps 'coming back' even if it's been months.

Every time I leave her, I make sure that we are on 'good terms' if possible. I know each time I see her it could be the last time. I don't want that posthumous guilt to deal with--although I have done nothing to deserve any kind of guilt.

Everyone is different, as to how much 'abuse' they can take. Me? I just turned 64 and DH is now counting down the year to my 65th birthday so he can retire and never have to get out of bed all day. So--I have other things to think about.

You'll find there are a LOT of us who have simply cut a parent out of our lives and many who are very cautious with boundaries.

Whatever works for you. There is no right nor wrong answer.
Helpful Answer (13)
Reply to Midkid58

You certainly do not want to cause your MIL more anxiety and angst than she already has by visiting her which creates the need for medication. That's obvious. What I'd do is visit from afar; go to the facility and view your MIL w/o her knowledge; see for yourself that she's okay and looking healthy and well cared for. Then you'll feel good that she's being cared for properly and in good hands, and you can leave with that knowledge in your back pocket WITHOUT causing her all ends of aggravation.

The thing about dementia/Alz is that YOU have to accommodate IT. The disease is unrelenting. It's not about you, it's about her and what's required to keep her happy and calm. Why would anyone want to force visits on an elder when it causes them so much despair.........that makes NO sense to me. I'd pass over that advice if I were you.

Good luck!
Helpful Answer (9)
Reply to lealonnie1

Just curious if the visitors are trying to make her remember.

With my grandmother and my grannie it was much easier when we just visited in the here and now. Never correcting or trying to jog memories. I would participate in activities that they could enjoy, sing alongs, throwing the stuffed
animals back and forth, looking at the plants, enjoying a soda or ice cream together, anything that brought them happiness right now. They didn't know who I was but they knew that I loved them and I was fun. It takes some getting used to, them not knowing who you are, but it's okay that they don't, it is nothing personal.

Realizing that they can not engage in our reality and focusing on bringing a smile to their faces can go a long way in making the visit pleasurable for all. I have found that they can pick up on our feelings, so much like babies can read our inner self and it is really important for us to be calm and happy in their presence or they experience our turmoil and feel our anxiety.

I would try to find a way for pleasant visits before I discontinued giving them my love in person.

One great thing is that you can do the same thing over and over once you find what can bring a smile. Just be silly and loving and full of laughter, it can only help all of you through this difficult journey.
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Reply to Isthisrealyreal

If the visits are making her worse they should be discontinued. You should speak with her caregivers daily and be certain they have your contact information.
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Reply to AlvaDeer

Do you visit for you or her? If for her, then I would cut down the visits. Maybe when you do visit 1 person at a time. Even two people maybe too confusing. Ask the staff when they think the best time of the day for her is. Maybe morning just before lunch. Maybe right after lunch before she tires. Definitely not late afternoon. Maybe too many questions are asked. Keep conversations where u just talk about your Day. The anxiety may come from her trying to find an answer. Continue short visits. Mine at times were just 15 min but I was only 5 minutes away.

Is this anxiety fairly recent? If so, MIL maybe in her final stage. With my Mom anxiety was the sign of her starting the dying process. She could not sit still. Going constantly in her wheelchair. Would not sit long enough to talk to her. Then the humming started. Each day she got louder and louder. She had to be medicated. She was gone two weeks later. Her body started to shut down.

If the anxiety continues, I would not put her thru that. Maybe you can check on her from afar. I noticed before Mom passed, she just wanted to be left alone. Nurses could not get her out of bed, Hospice was called in. She shut her eyes and never opened them again. She responded to voices and touch but she never opened her eyes.
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Reply to JoAnn29

Have you been given access to a description of her dementia? I visited my mother every day for five+ years (only child), and the thought wouldn’t have occurred to me to “discontinue”, but if I’d been asked by the staff, I would have visited for shorter lengths of time.

My mother couldn’t follow conversations involving more than one person very well, so we always took turns speaking, and there were almost never more than two people visiting at a time.

As she became less verbal she continued to have pretty tragic anxiety attacks, and did receive Ativan, not too often, but it caused her to sleep for 24-30 hours after each dose.

I wouldn’t personally have been comfortable not visiting, and not seeing my present LO, a Covid survivor, for the last 4 months has given ME intense anxiety, but there’s no way getting around that.

Your situation is tough, with no perfect answers. Do your best, with love. That’s really all any of us can expect of ourselves as caregivers.
Helpful Answer (5)
Reply to AnnReid

Your profile says that she is in AL. Is that still the case? I can't imagine AL allowing visitors. All the ALs that I know have a strict no visitor policy, unless it's through a window or across a patio area. Nonetheless, if the visits cause agitation, I'd reduce or cease with them. It's about her welfare, not the other family members. Plus, all of the visitors, unless they are self-quarantining are placing her at risk of covid.
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Reply to Sunnygirl1

Pre-Covid, I was visiting my dad in AL for several hours every Saturday. After Covid, no visitors allowed and his health has gone downhill being cooped up in his room. He has spent the last 2 months between long term care and the hospital and we are moving him to memory care next week. I have seen him once through the window during that time and have talked to him on the phone quite a bit. As his guardian, I am a source of his agitation because he doesn't like the fact I have control yet every once in a while, he thanks me profusely for what I do for him. He is not nice to me most of the time and gets upset on the phone so I have learned to stay away. Other family members comment that they really always have nice conversations with him but he treats me like crap most of the time and I have learned to accept it. I truly don't believe it's HIM talking -- it's the disease.
Helpful Answer (3)
Reply to Babs75
JoAnne80 Jul 17, 2020
It is not HIM talking. I cared for my husband for 10 years, starting with a lot of arguments. After several years of diagnose of dementia, then Alzheimer's as he got worse over the years, he insisted I was not his wife of 55 years, I was just his friend and asked me daily to take him 190 miles away to see his wife and son. Our son lived 35 miles away from us and visited once a month or so. I learned not to get upset after the first few times he didn't know me, even didn't think it was me in our wedding picture, but knew it was himself. Please join a caregiver's support group, one particularly chaired by someone who is a professional caregiver support trained person in dementia. From the chairman to other attendees who are going through the same situations as you, it will help you understand your dad more, and learn a whole lot of ways they handled situations. I actually got to where instead of crying when he didn't know me, I chuckled and let him go on believing I was not his wife. You don't want to get an Alzheimer's patient angry over something they truly believe in. Their physical strength may be stronger than it was before, and could get angry to hurt you--my husband's was like that. They don't know what they are saying or thinking. Sometimes I just walked away or changed the subject. He never hit me during those 58 years before he died, but I was afraid if I didn't change the subject, walk away, go along with his thinking, that he just might hit me. Better to let them think what they want, it's not going to get any better, but will get worse and know that when your loved one did not have dementia that he/she was a wonderful person, and loved you very much. That was my crutch to get me through the days and nights--our wonderful life before dementia/Alz. Good luck.
If the visits are upsetting her, then they're not helping her, right now. There are other ways to check on her, though those might not feel so satisfactory to you, as a personal visit. The good news is that dementia progresses. Sooner or later, she'll get past this phase. If my visits were upsetting her, then I'd probably not visit for awhile. Might send one of my friends, whom she doesn't know, to check on her and give her some cookies, or something.
My family always travelled a lot, going to mountains or the beach every weekend. I kept up that custom for my dad until I realized it was counterproductive for him. Now, for his sake, we stay home. The right thing doesn't always feel right.
So, yes, I think you might be wise not to visit for awhile. It won't be forever. Just until she changes enough not to get so agitated. Let's hope that's how it works. Seems like there's hope, if she only responds that way to family, and she's starting to forget who you are. Once she's totally forgotten, maybe she won't get agitated anymore.
Helpful Answer (2)
Reply to Mykids92

I had the option of video calls with my mother during the coronavirus lockdown, but I felt it would be more confusing to her than helpful. I've been relying on weekly photos and short updates from staff. I'm going to try a visit as soon as I can visit, but worry that wearing a mask and social distancing will be confusing. The visits are partly for me. My mother seems to be doing fine on her own with her facility's staff, who are very caring. Also it's good for the facility to know that there is a concerned family member checking in.
Helpful Answer (2)
Reply to NYCdaughter
Isthisrealyreal Jul 17, 2020
Social distancing doesn't need to be practiced if you are wearing a mask and wash your hands before the hug.
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