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Mother with vascular dementia has been in a memory care facility since December 2021. Even though she has finally made a friend and has settled in to some sort of normalcy, she still asks to go home even though she does not know where home is anymore. My sister and I would love to take her with us when we go to family functions or to the park or to shopping or out to eat but it’s literally a physical fight to get her back into the facility after we take her out for fun. So, we haven’t been taking her out and the guilt is horrible. I hate the fact that she misses out on the things that she used to do. Any suggestions or similar issues?

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I am sure that you want to take mom on outings but it sounds like the stress is not worth it for either of you.
If there is a family gathering that you would love to have her attend why not bring the people to her. Small groups can visit at a time, not the entire clan at one time.
So people that have not seen her in a while can be the first to visit. (any from out of town for example) then the rest. Best if it would or could be done over the course of 2 or 3 days.
She would have visitors, would be less stressed.
No reason for the "G" word. You can feel bad or sad that she can not be involved but guilt should not be a feeling about this.
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You shouldn't be taking mom out of the Memory Care ALF anymore, nor should you be feeling guilty about making that decision. With advancing dementia at play, like you admittedly said, she doesn't even realize where 'home' is anymore. Because in reality, 'home' is a place in time now more so than a brick and mortar building. With dementia, the elder goes back in time as the dementia progresses. The best way I've seen it described is as follows:

"As their disease progresses, they may have access only to their first 50 years, then 40, then 30, and so on, until they go back to their childhood memories. This is not an orderly reversal – the person may remember more or less on different days and at different times during the day.

This results eventually, in the person with Alzheimer disease/dementia thinking they are much younger than they actually are. It is not as though they realize they are, for example, 81, but they can only remember their first 30 years. Instead, it is as though they are the person that they were at age 30. Consequently, they are confused, because they may not recognize their family, since they are looking for the individuals they were sharing their life with at age 30."

This is why folks with dementia are constantly asking to 'go home'........they're back in time and looking for some place that no longer exists. Distract her when she talks about going home, and bring out some photos or a sweet snack instead. Get her off the subject of 'home' and that's your best bet.

Your goal now is to keep mom relaxed and not agitated, and in familiar surroundings, which is her Memory Care ALF. When you take her out, she's disoriented and and not sure what's going on. She doesn't want to go back and then you're fighting TO get her back to the MC. That creates a bad scenario for all concerned. Leave her at the MC and take the fun TO HER instead. That's what I did with my mother who lived in MC for the last almost 3 years of her life. It got too difficult to take her out, and if I brought her to my house, she immediately wanted to leave and would get hyper and nervous about it 'getting late' or 'the weather'. I soon realized I was creating more trouble for her than curing by taking her out. So I'd bring food and fun to her in the Memory Care. I'd bring pizza and the grandkids and we'd have a pizza party there in the library. Or Christmas Eve dinner of lasagna with gifts and decorations. She didn't feel like she was missing out that way, and neither did I.

That's what I suggest to you: bring the fun to HER in the MC now and cut down on the stress and confusion in bringing her out. Realize that she's in a different state of mind now, and YOU enter HER reality.

Here's the article I mentioned:

Understanding the Dementia Experience, by Jennifer Ghent-Fuller 
https://www.smashwords.com/books/view/210580

It's a free download with fantastic information about dementia from HER perspective. Lots of tips and tricks to use yourself to help you with the journey you're on.

Best of luck
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Sharovd Jul 2022
I have read that booklet and it was very informative as is your response. The "home" thing is extremely frustrating. My husband has mid-range dementia and still lives at home where we have lived for almost 19 years. At least 5 times a week he wants to go "home". When I ask him where " home" is, he points to our next door neighbors' house and says, "It's right next to Bob's. Most times he gets so fixated on going home that I'll say fine, " Let's go" and I'll grab the keys and tell him to get in the car. I drive down the street and then make him tell me where to go. He always directs me back to our house and I pull in the garage, we get out and go in the house and he's fine. He is now home. It's a pain in my butt, but otherwise he will work himself into a total frenzy and then I have to deal with that. Another good book for caregivers is: Creating Moments of Joy
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There may be things you hate, but you are not God, so you can't really be expected to "fix everything". You Mom's vascular dementia is a fact of her and your own life. That won't change. Taking her from the facility is not helping her, and is in fact hurting her so that's the first thing to stop. She is in care because she needs to be in care. She has dementia and may not even remember these outings you seem to have some magical thinking about.
You say guilt but I would ask you to consider that what you are feeling is the other G-word, which is grief. Guilt belongs to felons; they seldom feel it. You are a human being with limitations. You aren't God or a good fairy and you have no magical powers to help in this.
It is normal to mourn and grieve these losses we are witness to in our LOs. It would be abnormal not to be hurt by their losses.
Your Mom has had her life, and I hope it was a good one full of wonderful memories for you. Now she has been overtaken by a dreadful disease which will cause loss upon loss for her throughout the remainder of her life. Don't make it worse with expectations of lovely field trips that only end in more grief.
I am so sorry for all your Mom is going through, and I am sorry that you are grieving so over it, but it is WORTH the grieving. Allow yourself to feel all the pain, but don't allow yourself to make yourself somehow responsible for it.
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raynak26 Jul 2022
i needed to read this, thanks so much! My mother has dementia and is super difficult so this is just a good reminder that her problems aren’t mine and I can’t fix everything for her. Thanks
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Sometimes the family wants to go on treating the dementia patient like the person they used to be. I had that problem with my dad’s sister who believed that if we treated him as if he were okay, he’d still be okay! This was delusional thinking about a man who was 92 and had cancer and dementia. My aunt caused no end of problems to say the least. When a LO gets very sick, we need to accept that family outings are no longer possible and that our wish to continue them is to make ourselves feel better, not the patient. They know very little, don’t remember the events, and could possibly be confused, agitated, or otherwise mentally harmed. I know, all we want is for things to be like they used to be. But that’s impossible.
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My mother asks every time I visit to take her home. She no longer has a home and has been in her facility for more than 2 years. But she still asks every single time I visit.

I never take her anywhere, she is no longer mobile so would be very difficult to do so, but when I was able, she didn't want to return and got very angry. She also got very little joy out of going places.

I personally wouldn't take her anywhere and instead bring as many things to her that will give her joy.
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An outspoken nurse asked me "why didn't I take Mother home for the weekend?" (From Respite Care) "Many of the other residents do".

Because.. besides the mobility issues, it would cause her much upset. It had taken much pushing, convincing & threats of Doctors & Police to even get in the door. Emotional upsets now took much time to recover from.

"Oh" she said. "I didn't realise. In these cases, better to stay put. Visit instead".

I did feel a little pang of guilt as I watched an elderly man transfer his elderly wife from her wheelchair into his car one day.

But Alva is right - not really guilt, but grief/sadness.
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Sadly, the home most demented people talk about does not exist anymore. They are no longer the same person that lived there. Of course, they long for it. I would just demur and indicate it is something to think about. You might ask her what she is thinking about and misses. It might surprise you. She might be talking about her childhood home, or her mother, as we get older our memory goes everywhere. And her memory will probably move onto something else. For some individuals, getting in a car and going somewhere different and then getting back in a car and, again, going bak to somewhere different, can be upsetting and confusing. If she is comfortable where she is, be thankful and just help her spend her time there. Don't feel guilty if she is homesick; we all are as we get older. Youth and a full life are wonderful things, and it is sad to lose them. But it is our reality. Accept the sadness in both of you and move on. You can share it with her, but you can't change it.
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Cover999 Jul 2022
The song "Afternoon Tea" by the Smithereens seems to fit here.
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Don't take her.
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We use to take our step-mother out to lunch, we stopped. She just sits there doesn't say a word, can't decide what to eat and eats two mouthfuls and makes faces cause doesn't like it, yet wants a box to take it back, then she puts it in her freezer or fridge and never eats it.

No clue and most of time she would forget that we were picking her up and be in the dining room eating when we came there, although we called her 1/2 hour before we left.

Not worth it for her or us. She is not the person we knew. We had to adjust. Guilt? No reason to feel guilty we did not give her this disease. Guilt is self-imposed a total waste of emotions, serves no useful purpose, keeps one stuck.
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I suggest that you try an outing, but be prepared to give her some anti-anxiety meds at the meal so she will be relaxed when it’s time to return to her facility.
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Thank you so much for all these postings. I saw this topic just as I was trying to come to grips with the same problem. The institution we have been "blessed" with is unloving and bleak, and leaves my husband sitting alone in a chair for hours every day unless I come to do something with him. I have not yet started scheduling the handi-dart for transport to various places, and may find it isn't a good idea after all - as mentioned by many in this discussion. Or if programmed properly it might be good. But what I have noticed is his relief when I take him away from his "floor" and into one of the pleasant visiting rooms. Twice we have had successful gatherings there with family and also with old friends. I find that even though he is unable to communicate fully anymore, he does process and enjoy the conversation around him of people who are important to his life, in pleasant surroundings with a "picnic" I brought in to share. In this environment those around him actually listen and respond when he has something to say.This is in direct contrast to the care facility's staff, who are busy, emotionally distant, and uninterested in giving up any of their "work" time to engage in genuine socializing. "How are you today dear? That's nice. Goodbye"....just doesn't cut the mustard. Go figure.
I digress. This forum is new to me - a valuable find. At the end of the day I am taking away this important message: "grief, not guilt".
Thank you.
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JoAnn29 Jul 2022
OMG, the staff does not interact with ur DH. There should be some type of activity going on. My Mom was in a NH. Most of the residents had a form of Dementia. Mom was kept in the Common area because I requested it. She too could not always participate but she loved watching other people. I came in once and one of the nurses was talking to her at the table. Nurse told me Mom was telling her how to make cinnamon rolls. I am sure that this was not the only time a staff member took time to talk to Mom.

I might ask why the residents are not being given some type of stimulation. Can DH be wheeled out to a Common Area since he seems to enjoy it?
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Pretty much ALL Dementia patients ask to go home.

Here is a video that addresses what to do and say:
https://youtu.be/tYNxcXLwZjA

It is very helpful!
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TouchMatters Jul 2022
Yes. Very informative. I hope others here watch it.
Thank you for posting. Even as an experienced elder care management worker, we can always learn more ways to communicate effectively with compassion, respect, and kindness. Gena
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You have so many great responses here. You are grieving the person you knew as many of us here have done or are still doing. One thing I find special with my mom suffering from dementia & Alzheimer's is that I get glimpses of who she was at different stages in her life. I've learned to roll with it (after several years, much practice, and a great social worker and care team). Sometimes it seems she thinks I'm a friend instead of her daughter. In the process I've gotten to know her a bit more as Betty instead of Mom, parts of her she would never have exposed to me because we are often so careful as parents. She must've been so fun to be around as a teen and young adult. It's a little silver lining I can hold onto.

It's traumatic for my mom to change locations in any way these days. My new focus is whatever keeps her smiling and laughing. It's then I know she feels safe, loved, and validated. Maybe you can find comfort in the same? Hugs to you during these very challenging times.
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Alvadeer … what a lovely way to put it..

Lrs123 … my motherinlaw called me friend too. That was ok … she knew someone cared.

one walk up and down the hall to the door and she began to fade and id leave.

once a week was enough. I tried two times once and shed forgotten who i was. Once a week shed recognize me ! Smile. Open her arms and say “im so glad you came.”
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Only what you're mom hates is important. Bring her photos of events if you have a need to share. She doesn't care. I probably care more about your photos than she does.
Could it be that when she says she wants to go home she wants to go back to her room?
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Is your Mom in a private room? Is there a visitors area?

Your Mom could be asking to go home just because she wants a change in what she sees and for her, home is a way of asking for that scenery change. I used to think that I’d be able to take my Mom with me on errands and go out to eat with her. However, as the dementia has progressed, it has been tougher to do the wheelchair transfers as well as she is becoming more incontinent and combative.

I am sure that when you take her out, she is having more fun and stimulation, than if she stayed within the facility. She wants to be with you guys since you guys are doing fun things and if she only sees you while you are doing fun things, then you must be doing fun things all the time and she wants to be there!

So I am a boring person. I bring outside food to her place (especially fresh fruits). We try new takeout food in her room. I notice that my mother brightens up if we walk around the parking lot in the sun then go back. We still go for rides, like to the car wash and the drive up window to Starbucks and the bank.

After the outing, she and I feel better, however, going back is okay because I’m clearly leading a boring life (She actually told me that)

You might see if you can do fun things with her in her room or the facility. That way, she will have pleasant memories of the facility rather than a place to be dumped while everyone else does fun things.

Its taken me awhile to adjust to my new normal. However, with her combativeness and incontinence (in my car and when we go out), and my difficulties doing the wheelchair transfers, this is much better than the arguing, the crying, and my angst.
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Natasana Jul 2022
Ha! I'm boring too! Nice to know we're not the only ones. My mom will probably be in memory care within the coming months. I see myself doing just as you described. Hugs!
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DebAnn62: Taking your mother out of her Memory Care facility for an outing is not recommended by me. It would cause her unnecessary confusion. To an elder with dementia, "to go home" has a changed meaning to the patient, if you will. Due to a diseased brain, they are unable to discern that 'home' is not what they perceive - even if their mind allows them THAT much focus. Most likely, it wouldn't.
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You say she's made a friend and settled into some sort of normalcy.

Taking her on these outings disrupts that normalcy, dementia patients thrive on routine.

Stop taking her out. It sounds like it's doing way more harm than good.
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1. Do not take her out of memory care.

2. Do not take her out of memory care.

3. Read 1 and 2 again until this sinks in.
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By all means, continue to take your mom out. This is so important and helpful to her in so many ways. As I read some others do not agree with me, ask a professional (social worker, administrator) how best to proceed and WHY.

As I read more of the responses below, adjust your. thinking about 'outings.' An outing could be going on the patio or sitting on a bench close by the facility. The outing needs to meet your mom's needs (and abilities) 'now,' not the like the outings you used to have.

FIRST RULE: Never ever fight with a person inflicted with dementia. You set yourself (and them) up for emotional upheaval and a no-win situation. This is where you are now. When you learn how to communicate with your mom (with her now brain / cognitive abilities), you will not fight with her at all. You will respond in ways that support her well being.

With suggestions below, role play with a friend or family member.
While my suggestions are logical and effective, actually doing them takes practice. Be gentle with yourself learning this new language = dementia.

It isn't lying when a person has dementia as the 'goal' is to maintain equanimity, calming, emotional evenness of the person inflicted. In other words, we tell them what they want / need to hear to do what is needed for their welfare.

We cannot talk to a person with dementia as if they do not have it. Their brain function is diminished; they do not have the bran cells they used to have to make logical / rational sense. They do not know what is best for them, so loved ones need to do that.

When you understand your mom's brain function / mental-psychological ability, hopefully the guilt you feel will ease or dissipate (because there is nothing to feel guilty about - although guilt is often deep rooted and needs to be understood, explored / processed to be released). The guilt is from a lack of knowledge and understanding that doing what is in your mom's best interest is RELATING and COMMUNICATING with her in ways SHE understands to the degree you can get her to go along with what is needed. In other words, the carrot on the stick.
WHAT TO DO: You tell her she is 'going home' and then change the subject. Do not harp on anything or make a big deal about it. If she says something when at the facility, tell her you are picking up her suit case / clothes 'to then go home'. Tell her you and she can pick out the clothes she wants to bring home together if she resists going inside. You need to ease into these situations by trial and error. It is not an exact science by any means. Staff should be able to help you / support you in how to interact with her.
I STRONGLY SUGGEST that you listen to Teepa Snow's webinars / go to her website as she has a lot of free information. I studied on-line w/her (webinars) for over a year and printed out volumes of reference materials.
If the GUILT is keeping you stuck, you need to discuss this with someone educated / trained in dementia who can help you. The tricky part is that different parts of the brain that are affected respond differently to stimuli and cognitive functioning. Nothing is black and white. Everything is shades of gray.
BE SURE TO show respect and caring. Hold you mom's hand while talking to her. People w/dementia 'aren't stupid' they feel - even if their mind / brain isn't functioning as it used to. I have a dementia client and I tell her that I love her and she responds with such appreciation and kindness, while talking non-sensical stream of consciousness (?) words that never make sense. She feels my caring. And, I always either agree with her or tell her "that is a good idea, I'll have to think about that" since she doesn't make any sense (and may ask me a question). I will also say "I don't know, I'll check into it."
DEAL WITH YOUR GUILT. Once you can get over this hurdle, the communication and feelings about your interactions with your mom will improve. You WILL feel BETTER when you realize you are communicatin
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This is new to your mom. She needs to figure out her day, make friends, join in activities, I would not take her out. You can visit her as often as you like.

I don't know what activities your moms place has, but at my moms, there is a patio with rocking chairs. I have taken donuts and coffee to her and we sit outside and talk. I would show up at moms and say let's do your laundry. She would go to the laundry room with me and we would put the clothes in and walk around the facility until her load was ready for the dryer. My mom watched certain shows so I would go over with some popcorn and we would watch it together. Once my mom made a friend or two, she started to do these things with them. I have even joined mom and her new friends for lunch. Keep in mind...dementia is an ever changing condition. Moms assisted living friends have passed and mom is now in memory care and quickly running out of money, so we have yet another move to make.

During your moms first year, I would not recommend taking her out very often if at all. Let her get used to her new life in her new place.
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You might ask the facility if there is a large room to gather the family around her. Perhaps bring in a lunch or desserts and do a mini family reunion. Doesn't have to last long, but she would be able to see the family without sparking the memory that of going to a home other than where she lives now.
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@DebAnn62,

You and your sister want to provide fun festive experiences to your mom, and are lucky enough that mom has made a friend at memory care.

Perhaps you and sis could bring a tasty picnic, or afternoon tea and cookies, to the home and invite your mom’s friend to join in the bounty? That would would be “outing” enough I should think, and not too exhausting for the ladies.

And forgive me if I’m being presumptuous, but don’t forget that occasional treats for the staff could make a party atmosphere, too. A note of thanks to the staff from you and your sister and your mom along with a box or platter of treats left for the 24 hour staff can go a long way.
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My suggestion is probably like many others, since I just joined this forum. Instead of taking her out, why not bring something in? Maybe there is a room in the facility you can use when family and friends can get together with Mom. A birthday, an anniversary, a holiday, or just any day, with fun - some children's games - and special fun food - at the facility. Then, YOU would be the one going home. :) It might work?????
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My mom has VD as well. She still wants to go home at the end of the day in MC. We still take her out. Many on here poop on the idea, but it does my mom good and the staff agree. Each person is different.
I usually make something up, the Therapeutic Lie...I forgot my jacket inside. Will you go in with me to get it? They need you to sign some papers. Your friend, Joyce, wanted to talk to you about something. They're having a party and invited us. Well, I'm going inside and I don't want you just staying in the car by yourself. In my mom's case, she thinks she has a baby me still...so the MC workers are always babysitting while we're having fun, but then we need to come back to relieve them. By the time we get inside she forgets. She then is familiar with the MC place.

I then go inside for awhile with my mom until she gets settled and interested in something else. Then I tell her I forgot I had an appointment, or I have to go pick up one of my kids from work. I then tell her she might as well stay here since she's tired. Tell her you'll be back later...which is technically true.
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Bring experiences "in" to her. Bring meals from favorite restaurants. Bring flowers. Bring lotions with scents she loves to rub into her skin. Bring in activities you can do together: watch movies and eat popcorn, bring simple crafts (make scrap books, decorate cookies or cupcakes, make greeting cards...). She will look forward to your visits more when she knows you are going to interact in fun ways and be less concerned about not getting "out".
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