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My visits really seem to upset my mom. She has vascular dementia. She cries the second she sees me and grabs onto me and sobs through our time together. Says I need to save her, move in with her.

The memory care facility is a nice one. My parents chose to live there, in the independent living area, but are declining so rapidly they could not keep their place independently, even with 24hr caregivers. Very erratic behaviors and eloping, using hallways as bathrooms etc. Doctors are trying to figure out what is happening with my dad’s fast decline. Both parents recently moved to memory care, within the independent living apartment facility they moved to in November. They are both rapidly declining, but in different ways. Both later stages. My dad has lost almost 30% of his body weight in spite of being made to eat regularly. They don’t know why.

Both are miserable and I have so much guilt that I can’t help them. Visits are excruciating because my mom doesn’t understand anymore that I have a job and two kids at home to care for. She begs me to taker her with me, but they are far past the point where I can continue to help care for them at home. It became scary and unmanageable when we are doing that.

Looking for advice on visits and whether they are helping my mom or making it harder for her. I currently see them three times a week.

Thank you!

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It may be best for all involved that you cut your visits down to just once a week, and see if that doesn't help calm things down. And if you feel the need, you can always call her once a week as well and see how that goes.
If your parents are being well taken care of and you like the facility that they're in, you really can't ask for more than that.
Your moms(and perhaps your dads too)brain is broken and will never get better. There is nothing you can say or do that will change that, so you must just come to peace with that and try and make the best of the situation, without jeopardizing your own health.
I wish you the very best, as you navigate your parents new normal.
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Stacyy Feb 2022
Thank you for your reply. That’s helpful and feels like the right call at the moment. I struggle with not wanting to abandon them or have them perceive that they are being abandoned, which is what happens when they forget every day that I’ve been there. But more and more she gets upset when she sees me, then makes me feel really bad that I don’t stay with her permanently. It’s tearing me up.
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My mother would do and say the same things when she first entered the Memory Care. It absolutely wasn’t safe for her to live alone. Living with me didn’t work at all.

What helped our situation was simply time. As my mother’s dementia advanced, her pleas came to an end.

I visit my mother about once a week now. Three times a week wouldn’t have worked for either one of us.

I’m so sorry this is happening to you all. It’s brutal.
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Another thought:

Teepa Snow has some good videos on YouTube, with the titles of “Making Visits Count”.

There are quite a few parts to this series, which you can search for, on YouTube.

Here is just one of the parts:
https://youtu.be/gCAAy53cZDQ
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Stacyy Feb 2022
Thank you
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Do you think she remembers your last visit and how upset she got? If not, it might not matter how frequently you visit -- it's her reaction no matter what.

Obviously you don't want to abandon them, but cutting back a bit is probably a good call. I found with my mom that no particular behavior lasted too terribly long as her vascular dementia progressed.
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Stacyy Feb 2022
Thank you!
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My dad is now under hospice care, as of today. He is refusing to eat now and has already lost 80 pounds in a little over one year. They aren’t sure why he is declining this rapidly. He drank a bottle of shampoo today, because he said my mom made him.

This disease is a life-destroying heartbreaker. My whole family is being taken away.
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XenaJada Feb 2022
Im so sorry! It is heartbreaking to watch our once strong parents decline this way.
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Stacyy,

Thank you for the update. I’m so sorry this is happening.

At my mother’s MC, things like shampoo are locked up, to prevent mishaps like this occurring. I wonder how your father had access.

It’s all so horrible. To watch them fade away from dementia is horrible.
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Stacyy Feb 2022
Thank you. I am not sure about how the shampoo incident happened and will
ask. I know they have assistance with bathing.

thank you for your reply.
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"This disease is a life-destroying heartbreaker." Amen, Stacy. No truer words were ever spoken.

I'm glad your dad is on hospice care now; they were wonderful with my mother who had their services for 2 months before she passed. I urge you to ask for calming meds for dad now; 5 mg of morphine and/or .25 mg of Ativan is an extraordinary combo to keep the elders calm and not agitated or in any pain at all, w/o overmedicating them to the point of being zombies.

If you want to visit but mom gets upset, I suggest you visit from afar. Don't let mom see you, but you get to cast eyes on her at the same time. Set it up with with the staff that you can come by during an activity or a meal when you know where mom will be at a certain time. Zoom/Duo calls are also a good idea that the staff can help arrange.

I know how heartbreaking this stage of the journey truly is. From one daughter to another, you have my heartfelt condolences. Try not to feel guilt about what's going on; know that your parents are being cared for to the best of your ability in a safe environment at the MC, and that it's the DISEASE that's causing all this pain and chaos, not your folks. What's left of them is a husk; dementia has stripped away their real personalities and left you with this: a mere shell of who they once were. May God bless you and grace you with the strength and courage to withstand this decline until He chooses to take them Home to be at peace, finally.
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Stacyy Feb 2022
Thank you.
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I am so sorry that you are all three dealing with this. Stay away if it is easier on you. She is probably okay until she sees you. You represent so much to her. But Do try to see them from afar so you can know she is okay when on her own.
It is so hard to know what to do but realize it probably changes frequently for unknown reasons and there is no known right action.
The weight loss is alarming. Your dad may be grieving their situation on some level. So sad.
As miraculous as the human body is, it is meant to decline and nothing you do will stop that.
Perhaps the guilt we feel when we can’t help is a cost of being human. No matter what may have gone on before, we do want out loved ones to be safe and happy and know they are loved. At some point you will separate and that will give you some peace. You are a loving daughter.
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What do your parents' care team say about it? Have they offered any comments or advice about what they see?

I'm especially thinking of the mental and emotional impact on your mother of living day in day out with your father's unexplained physical deterioration. She is helpless to help him, but she can't either get away from it. And what does he say or do when you go to visit?

How do you respond when your mother becomes upset during visits?

This must be incredibly stressful and upsetting for you too. Hugs.
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Stacyy Feb 2022
You are absolutely correct about this. It is stressing my mom to see my dad decline. She was diagnosed first and to this day he still doesn’t understand that he also has dementia. They tried separating them, but my dad was constantly wandering back to her room and slipping into her bed. The caretakers are being given a run for their money—managing my family’s situation has been very difficult. Still trying to get their medications figured out. Both have very high amounts of anxiety and depression at this point. My mom says she wants a divorce, after 58 years. I think this is breaking my dad’s heart—he looks very sad when she says it.

It’s the hardest thing ever.
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According to memory care experts, loved one’s with dementia respond more favorably when they have a predictable routine. Therefore, try to arrange your visiting times so you create a regular schedule that your loved one can depend on. Ideally, your visits would occur during a time of day when your loved one is most receptive to visitors. 
Don’t fret if something comes up and you can’t make one of your planned visits. Things happen in life that are beyond our control. Instead, try a phone call. You can ask a staff member how your parent is doing and also spend some time on the phone with your loved one.
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Continue visiting. Your parents need your love and compassion no matter how hard it is. If you are visiting in the afternoons, your mother may be sundowning which is common.
My mother went through that awful stage of asking me to save her and take her home. Medication helps! It took a lot of trial and error to get her on the right meds, but it finally worked. She worked her way up to 100mg Zoloft once a day, and 50 mg Trazadone up to 4 times a day. That would make a normal person drowsy, not her!  It kept her just right. Seroquel works too.  Try a baby doll. It was enormously comforting for my mother! Ashton-Drake.com has dolls specifically designed for dementia patients.
Watch Teepa Snow videos. She suggests holding the patient's hands, making loving eye contact, and showing deep concern. Tell her to take a deep breath and you do it with her so she can see you. It actually helps both of you! She is scared and confused. Show her love and compassion and understanding. Agree with her-- do not use logic. Say, "I really understand what you're going through. I know you are trying very hard. You are doing very well. Let's try to figure this out together." But, of course there is nothing to figure out, you are just trying to soothe her. Be careful not to make promises, E.G. "I'll take you home." She'll hold you to it! Just look into her eyes and show deep concern. Lots of deep breaths and hugs! "How about we have a nice cup of coffee/tea." My mother responded to these tactics most of the time. This stage lasted 6 months for my mother. The medications helped a lot. I was able to wean her off them as time went on.  As far as your father is concerned, perhaps he is just ready to go. I've seen others (mostly men) in the nursing home just give up and lose weight. His spirit may simply be calling him to come home. You are doing everything you can. Do not feel guilty. God bless.
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Dear Stacy, you have made the right decision for your parents' safety. The gut wrenching part is that you can not make them happy. Know that any guilt is part of the process. Preserve your strength, health, and family by focusing on what is humanly possible to do at this point.

IMHO You don't have to change your scheduled visits. If your mom is agitated in your presence, adjust your focus to other aspects of her care.

I visited my mom every day, seven days a week for eight years. Six years in her home, 2 years in memory care, 1 month in ICU/skilled nursing. If she was up and about, I would sneak into her room and check her supplies and tidy up and avoid her seeing me till I could exit. If she had refused to get out of bed (threw her teeth & cursed at the aide!), I would coax her up, clean her up and direct her to go down to breakfast and high tail it down the hall and out the security doors, before she could even remember that I was there. When I started hospice for her and she had 5 x week aide: I switched to three times a week. ICU and skilled nursing: glove up, mask up, put a gown and face shield and pop in to see how things were going. Adjusting for COVID lockdowns and false positives that would have me cancelling my appointments and worrying about taking my COVID test, only to find that her second test was negative.

My point is that it can be a long journey and managing YOUR strength is vital to you parents' care. Keep your schedule because it works for you, but adjust your visits to monitor their needs.
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I think it's harder for you than for them. I understand what you feel, since I would feel the same. Really, there isn't anymore that you cold do for them. Cut down yo visits to the minimum.
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Stacyy My grandfather went the same route as your father is now. What it amounted to was, he lost the will to live because his body was just breaking down. He had been so vital and active all of his life. He did not want to go on. He made the choice to stop eating, too. He passed away 10 days later. Not wanting to scare you, but for me, it helps to prepare rather than being blind-sided. God bless you.
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Personally, dementia people may have some idea they are not home and they want to go home. I think visiting them stirs them up and then you feel guilty about seeing them like this and being where they are. They get upset. I would cut down on the visits considerably and try visits via phone calls. And three times a week is too much and too upsetting for everyone.
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BurntCaregiver Feb 2022
They need to adjust and get acclimated to living in the memory care. This will not happen if they are seeing their daughter all the time. She should stay away for a few weeks.
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Your parents are in an adjustment period which can take a long while. Mom seems scared as well. Your visits are upsetting because she/they want to come home. So how do you make it easier on them? A couple of reassuring ideas that worked for my family:
1. Discuss your concerns with mom’s physician. He/she can prescribe medications to ease the anxiety.
2. Make a giant poster of you with your family to hang in their room(s). On the poster, write “Stacy loves you. She is at home with her husband & kids and will visit again on Tuesday” so they know you’re coming back.
3. Create another poster about their life, written in short, easy-to-read bullet points. I included the topics such as: You are originally from (town/state), You now live in (state), You and Dad live here together, Dad was (career) and you worked as (a homemaker/career), You have xx children: (names), You have xx grandchildren (names), Stacy visits you every week, etc. Or include favorite TV shows, hobbies, etc. The list also gave the staff something to talk to your parent about.
4. Bring familiar items from home: a favorite blanket or sweater, a CD/CD player to listen to favorite songs, etc.
5. Keep favorite snacks on the nightstand – in a shatterproof container.
6. Togetherness is comforting for couples. Find out how often your parents can see each other. Are they in the same room, on the same floor, etc? What does the staff do to bring them together?
7. If your folk were pet lovers, get them a stuffed animal or robotic dementia pet (Amazon) to provide comfort.
8. Trust the process, even though it is hard!
9. Modify your visiting schedule to allow the folks to settle into their new environment. The facility will contact you in between visits if necessary.
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Stacyy: I am so sorry that you are going through this with your parents. I'm glad to read your update wherein you state that your father is on Hospice care. Perhaps you can visit your mother through a virtual visit, e.g. Zoom, et al providing the staff can set it up. Prayers and love sent. Your journey is most difficult.
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Katefalc Feb 2022
Excellent idea!
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I’m sorry for all the anguish you’re going through. I am going through the exact same thing with my husband who is at the veterans hospital for long-term care. I was going every single day but I needed to cut back to three times a week to save my sanity and his. If you’re going three times a week maybe that’s too much and you should probably cut back to one or two times a week just short visits of it a half hour to 45 minutes. Good luck to you this is not fun💜
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I would say to restrict your visits with your mother to once a week. Visit your father separately. If the MC they're in has an area where you can visit him without your mother being able to access it.
You could restrict your visits to phone calls only for a while.
Your parents need time to acclimate to their new living situation in memory care.
Don't call or visit them for a couple of weeks. They need to adjust to living in memory care and won't if they see you.
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Just went through a similar situation with my mom, age 96 and dementia. She did not acclimate to memory care, and it was unbearable to watch the decline. Knowing that it would haunt me, I decided to bring her to my home and care for her with 24 hour help. It was challenging, but the last months were so precious, and she was so much more content.
Hate to say it, but 70,80,90 -year Olds are not interested in making new friends or being told when to eat or bathe. Even with a diagnosis of dementia, my mother knew her people and family and that was comfort for all.
If you want to talk directly with me, let me know and we can connect.
Best wishes, and hang in there.
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My mother 83 also has vascular dementia. Her memory is really gone. I can visit in the morning and by that afternoon she does not remember it and wants to know why I haven’t been up to visit. Talking to her on the phone only upsets her as well. Begging me to come get her out, then prolonged agitation. Visiting her will cause her to be agitated for days afterwards. I have cameras in her room so I can watch her all the time from my cell phone. I only go visit her now every couple of weeks. Even with that I wonder if I’m doing the right thing visiting her, it only upsets her. I stay on top of all of her needs. I’ve hired personal caregivers to stay with her 12 hours a day. I talk to them daily, they text me if they have any concerns. I talk to the home care nurse that visits her twice a week. As well as the nurse practitioner that sees her every other month. I’ll make sure she has all of her meds, I don’t feel like I can rely on the memory care facility not to run out so I get them myself and take them to the staff there. I do all I can for her however my visit only makes her more agitated. When Covid was bad after Christmas I did not go see her until things calmed down, for eight weeks! I will say during that time she seemed happier and more adjusted. The agitation started again after I started visiting again. All I can say is it seems to be a balancing act. All we can do in these cases is to make sure that all their needs are being met.
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