I visit once a week and every time she says she wants to go home. She doesn't understand that she needs 24 hour care. Has LB dementia and is 88. The last time she got mad and told us to leave. She told us to help her up so she could go and ask me if I had a car. I want to visit but it makes it worse.
All you can do is try to distract her with something else like an activity, a treat, or a different topic of conversation.
Sometime have someone she won't recognize go and visit her. Or even just observe her to see how her day-to-day like actually is when you aren't around.
Does she cry and beg to go home with other people, or just you?
Are others able to distract her easily?
She may need anti-anxiety medication to keep her peaceful and calm. It really helps.
Also, there's nothing wrong with a therapeutic lie. Nothing at all. Tell her that going home is not your decision to make. That it's up to her doctor to determine when she can go. If she persists totally ignore it and refuse any further discussion on 'going home'.
No, she will not understand what her needs are - this is always the 'razor's edge' of managing these situations - with compassion and sensitivity - wanting the best for our loved ones. They are scared, and feel rejected.
They get mad out of confusion (why are you doig this to me?) as they are stuck and no one wants to feel or be stuck.
What I would try:
The "I'm working on it" to give her the impression in PRESENT time that it will happen soon to ease her immediate frustration.
* Tell her you are getting a suitcase to 'pack her up to go home.' The manager requires that we take everything with us. That you'll bring it next time. You can try the same with "we need a truck to pack you up. I'm organizing it.
* I presume she won't remember the conversation. This approach is to ease her feelings and realize that you understand and agree with her.
* What you DON'T DO is argue or try to explain or convince her that she is in the best place for her. That won't make any sense to her and will add fuel to the already burning fire. She is 'on a missive' to leave - to feel secure as 'before.' And, no one wants to leave their home.
* Always try to divert attention.
- Perhaps after you say "I am getting a truck, you take her hand, then immediately change the subject and/or:
- give her a hand massage (feel this out; everyone is different) and she may be too stressed to shift into a massage.
- Bring / have available whatever she might be interested in - food ? puzzles ? stuffed animal ? to divert her attention.
The best support, I believe, you can give her is
H O P E
and
R E A S S U R A N C E S
that she is loved.
Agree with her. "I too want you to be home." So she will feel 'you are on her side.' And, she'll get it that she is loved.
Some also depends on how long she's beein in the nursing facility.
It is recommended to give a new person 'time' to adjust - and not to visit.
Discuss this with management. And, decide how to proceed. If she doesn't respond positively or if she continues to be negativity activated when you visit, perhaps it would be best to not visit - perhaps try visiting less often (i.e., in two weeks instead of weekly) and see how that goes.
* See if a volunteer or neighbor could visit. Assess if she has the same reactions. She may or may not. If she isn't as emotionally rattled with others, ask others to visit ... perhaps until she gets used to it.
KNOW that you are doing what is in her best interest even though it hurts and is very difficult for you/the family.
I think one 'good' way to figure this is how you'd want to be treated / spoken to if in her place (confused, disabled, scared).
It is when we can reach out of our self - (by) putting our self in another's situation to understand how another feels that our compassion helps us shift - and provides us with a new option to try. Be as real as you can be "I want you to be home, too."
Perhaps hire a massage therapist or someone to do art projects or something with her ... until she calms down / gets used to it - if she does.
Call the LB Association and see what they say.
You can also ask medical provider about mild medication.
Gena / Touch Matters
She held on to that. It stuck. Of all the things for her to remember and this is the thing she cannot forget. Months later and I'm still dealing with the questions about when she'll get to come home with me. It causes a lot of tears and now I have to explain over and over and over again that it's just not possible.
I wish I had never said it.
https://www.alzheimers.org.uk/blog/language-dementia-what-not-to-say
The 5 things to remember when someone with dementia is asking to go home also comes from the same site:
https://www.alzheimers.org.uk/blog/i-want-go-home-what-to-say-to-someone-in-dementia-care
It's not uncommon for a person with dementia to say they want to go home. This may be caused by time-shifting or general confusion, and can be distressing for everyone.
Below are a few considerations on what to say to someone in this situation who wants to go home.
5 things to remember when someone with dementia is asking to go home
1. Avoid arguing about whether they are already ‘home'
For a person with dementia, the term 'home' may describe something more than the place they currently live. Often when a person with dementia asks to go home it refers to the sense of ’home’ rather than home itself.
‘Home’ may represent memories of a time or place that was comfortable and secure and where they felt relaxed and happier. It could also be an indefinable place that may not physically exist.
It’s usually best not to try to reason or disagree with the person about where their home is.
If they don't recognize their environment as 'home' at that moment, then for that moment, it isn't home.
Try to understand and acknowledge the feelings behind the wish to go home. Find out where 'home' is for them - it might not be the last place they lived. It could be where they lived before moving recently or it could be somewhere from their distant past.
Often people with dementia describe 'home' as a pleasant, peaceful or idyllic place where they were happy. They could be encouraged to talk about why they were happy there. This can give an idea as to what they might need to feel better.
2. Reassure them of their safety
The desire to go home is probably the same desire anyone would have if we found ourselves in an unfamiliar place.
Reassure the person verbally, and possibly with arm touches or handholding if this feels appropriate. Let the person know that they are safe.
It may help to provide reassurance that the person is still cared about. They may be living somewhere different from where they lived before, and need to know they’re cared for.
3. Try diverting the conversation
Keep a photograph album handy. This could be a physical book or photos on a tablet or smartphone. Sometimes looking at pictures from the past and being given the chance to reminisce will ease the person’s feelings of anxiety.
It might be best to avoid asking questions about the pictures or the past, instead trying to make comments: 'That looks like Uncle Fred. Granny told me about the time he....'
Alternatively, you could try shifting the person's focus from home to something else - such as food, music, or other activities, such as going for a walk.
4. Establish whether or not they are feeling unhappy or lonely
A person with dementia may want to 'go home' because of feelings of anxiety, insecurity, depression or fear.
Think about whether the person with dementia is happy or unhappy when they mention going home. If they are unhappy, it may be possible to discover why. If they cannot tell you why, perhaps a member of the staff or another resident knows why.
Like anyone, someone with dementia may act out of character to the people closest to them as a result of a bad mood or bad day.
Does the person with dementia keep talking about going home when people are not visiting them in the care home? Does he or she seem to have settled otherwise? Ask the staff in the home as they may know.
5. Keep a log of when they are asking to go home
Certain times of the day might be worse than others. What seems to be the common denominator about these times? Is it near meal times (and would a snack perhaps help)? Is it during times when the environment is noisier than usual? Is it later in the day and possibly due to ‘sundowning’?
If you see a pattern, you can take steps to lessen or avoid some of the triggers.
So glad to hear from you and that mom is now in care. Good job. I know you struggled with all things mom for a long time and she is very used to having her way.
I remember your mom has in the past been very persistent and could really give a hoot as to your life. All the excessive phone calls etc. I wouldn’t expect her to change her personality just because she is in care. But you do still have to manage your response. Thankfully now it’s just once a week.
So, #1, this is just mom being mom and when she sees you, she puts on the pressure to get her way. It has worked so well for her in the past. 🥰
Realize you are probably a trigger for her to ramp up her discontent as she thinks somehow if only she can get you to do her bidding, all will be well. After all it was working for her for a good long while. Not working for you of course.
Mom always believed you could do whatever she asked and she’s not going to let that go overnight.
She believes she can control you and thus her life if she can just get you to take her home. Magical even fantastical thinking on her part at this point. I’m not saying she is thinking this out more so it is just her go to position at this point in her life. Her dementia will progress and this issue will recede as another pops up. This is typical elder behavior when they are frustrated they can’t get their way.
So my advice, don’t discuss going home.
If she presses for an answer tell her that you don’t know when she will be well enough to go home. “You have a care meeting coming up soon. We hope to find out then” or ‘“These things take time” or some other soothing, noncommittal answer.
Then say, did you like that milkshake Or some other distracting change in the conversation. This keeps her from being stressed and you not wanting to escape and not come back.
#2, manage YOUR anxiety when you visit. Set your intention before going in on what you hope to accomplish. If you are walking in with no game plan, you are up for grabs emotionally and will leave feeling worse than when you arrived.
Here are some suggestions. Really they are chores for you but allows her to see you and know you are doing things for her and gives you something to think about besides her being upset.
Talk to the activities director to see if mom is taking part in activities. If mom is not then perhaps pick one of the activities to attend with her to help her get acclimated. You might try music as that is good with all dementias.
Ask her CNA if she is going to the dining room for lunch. Encourage that. Ask how she is eating. Check on her weight. Find out how often she is weighed and keep up with that. All of these are signs of well being and will give you confidence that inspite of her pushback when you see her, she is doing fine and in spite of what she is saying, you will know that she is as good as can be expected.
Don’t stay too long. Do your chores. Give her a treat. Give her some love and leave. At some point when she isn’t as needy you might be able to visit longer one on one. Right now you have to protect yourself. Mom is being cared for. It’s up to you to take care of yourself.
Thanks for letting us know how things are going. Wishing you well. I’m so proud of you for getting her placed and regaining some control of your own life.
If she likes puzzles, about 30 minutes before you leave bring her to the "puzzle table" and sit and do a few pieces with her then quietly get up and leave.
If it is near a meal time get her to the dining room and help get her a drink, then quietly go.
In both of these you do not say good bye.
when she says she wants to "go home" remind her she is home.
Point out her clothes in the closet, the photos on the dresser.
You are not responsible for your mother's woes. You didn't cause it and you can't fix it.
You are responsible to visit her and love her and respond gently to her that you are so sorry, but she is ill and needs care and she is where they can care for her.
If she asks you to leave, do so, tell her you love her, and you will be back next week.
She sees you and her mind clicks in to "rescue" and she will try to get you to take her back to a life she remembers and loved. She feels frustration and despair. Don't abandon her to it. This is one more burden to bear, but you cannot fix it, and in fact it cannot BE fixed. Don't assume the mantle of guilt in this.
I am so sorry you have to bear witness to her grief, but this is well worth mourning for both of you.