Question for anyone. My mom has been in NH for 3.5 years. Has advanced vascular dementia. She daily cries and begs us to take her home. Obviously doesn't realize how long she has been there. We tell her 'a few weeks' if she asks. For quite a while what I've been telling her is that we will be able to take her home 'soon.' It's getting harder as she gets more and more persistent. Am I telling her the wrong thing? I don't want to give her too much hope but I also can't fathom telling her the truth, that she has to stay there indefinitely. It would devastate her and then she wouldn't remember anyhow and I wouldn't want to have to go through that type of discussion each visit. I feel terrible lying to her. I don't want to hurt her by giving her false hope but I also know if she doesn't have any hope, she will give up. She already told me from time to time she wants to kill herself. Anyone with experience with this type of situation. What is the proper thing to do? She now has atrial flutter with her heart and shouldn't be getting upset. I know crying is a big part of vascular dementia, but what can we do? Mom is 84.
WE HAD SNOW CLOSE TO 2 INCHES WELL I TOLD HER IT IS SNOW THIS WILL BE THE LAST TIME YOU WILL FEEL IT I HAD A SMALL BOWEL OF IT ..WELL I TOOK HER RIGHT HAND THEN THE LEFT & WHEN I GOT DONE SHE HAD A TEAR IN HER EYE SHE KNEW SO STILL SHARE THERE LIFE OF THERE LOVES AT THE LAST TIME POSSIBLE THEY WILL MISS ALL OF EVERYTHING BUT IN FOR NEW CHANGES SO MAKE THE BEST OF THERE LIFE I HOPE YOU CAN KEEP THEM OUT OF A NURSING HOME & HELP THEM ON THERE LAST PART OF JOURNEY OF LIFE ..I BET WHEN WE MEET THEM AGAIN THEY WILL LOVE YOU MORE ..
From Miriam-Webster;
Hope;
To cherish a desire with anticipation.
To want something to happen or be true.
Trust or to desire with expectation of obtainment or fulfillment.
To expect with confidence.
We all need to have hope, whether it's to move back home, be healed from cancer or reconcile with an estranged loved one.
Especially with dementia, be kind to their delicate psyche. Never disillusion them or take away their hope. All that's left would be despair. How mean.
I went through a similar thing with my father. He kept wanting to go to the "coffee shop." This was a local donut shop where he and my mother would go during the weekday mornings for a cup of coffee and a donut and would visit with their senior acquaintances. It was the last place he and my mother had gone together before she dropped dead of a sudden heart attack. I know that it symbolized "belonging" and "share experiences" to him. I simply explained to him that he had several strokes, that mother was dead, and he was not healthy enough to live alone now. I stuck to this story every time the issue came up. Eventually, he accepted it - even though he did not "like" it.
I am not trying to be "mean" to you - but I sense that you are avoiding telling her the truth for your OWN emotional benefit - not for hers. It reminds me of my mother's wake, when my brother, who flew in from out of town, told my father, "You look great." I pulled my brother aside later and said, "Why did you say that to him? We both know that he looks terrible!" My brother said, "I thought it would make him feel better." I said to my brother, "No - it made YOU feel better - and that's why you said it." Brother admitted that was true.
I disagree with a previous poster who said that "hope keeps us all going." Not everyone's emotional makeup responds to hope. False hope, in particular, make a person feel that they have been "lied to." It would be difficult to trust anyone again who gave me false hope by telling me a series of lies.
"Mom, it is no longer safe for you to be alone in my house. We cannot afford to pay someone to be there all day every day, it is much more expensive than this beautiful facility with folks around all day to talk to and to look out in case something happens. (then she says she was fine alone). Mom, if something were to happen to you in my house while you were alone and I was at work, I would go to jail, and you would have to be in a facility that the state chooses. So, you need to be here where I know you are safe until I retire (then she asks when will that be). In seven years. I cannot afford to quit my job"
One day she asked it for the third time in seven minutes and I said "what is my usual answer to this?" and she said "When you retire". So I said "if you know the answer, why do you ask?" and she said "because I keep hoping you will change the answer.".
My mom is still pretty high functioning, but her short term memory ability is gone, along with her ability to tell time or know what season it is, etc. So she is in a facility that is both assisted living and memory care (not a locked down facility) where she can stay as long as she is not a wandering risk, or on a feeding tube or permanent IV or a respirator.
It's my way of telling the truth, and giving her hope, and giving her the same answer every single time. Sometimes when I start my litany she says "oh, yes, I remember now."
When she asks when she will be leaving then my answer is when your hand is better [arthritis] - I praise her when she does the exercise - it is also a good conversation starter and diversion when needed
Why take away a hope - use whatever you can for your 'prop' because then she will see that you are making a positive move for her by buying these items - you will be her 'helper' in the transition - this may mean that she will focus on something else too like her hand exercises not just the going home aspect - as with all dementia issues this will pass eventually
There is something called Validation Therapy that works fairly well with this situation.
You can research it, but if can also find a support group for yourself, others may have excellent things that have worked.
The idea is, first to validate their feelings. Saying things like, “I know you loved your home.” “What is the first thing you would do if you were there? “
“How would you feel if you were home right now”
Then if they respond with any type of positive feeling, go with that. So, if they say “I would feel safe” “Or “I would feel busy”
Then respond to that.
You can say things like “I noticed that when someone (holds your hand, brushes your hair, hugs you, wraps you up in a blanket) you look like you feel safe.
Or you can ask them who her makes you feel safe? What do they do that you like.?
Then you can do those things with them.
If they only say negative things, you can say things like “I noticed when you were home you liked to rock in a rocking chair, or you liked to listen to ____music, or you liked to fix things.” Then you find and do something similar with them.
If you say “This is your home now” that is very distressing as it isn’t their home.
Instead find the emotion(fear, anger, confusion, boredom, restlessness, etc). Then find what activity they used to do they enjoyed, and replicate that.
If you go online you can find things like busy aprons that can keep a person’s hands busy. It is an apron with built in zipper, a Velcro buckle, a large button, etc that a person can fiddle with if they are anxious.
You are the best person to problem solve this, because you know your loved one better than anyone. Look at Melissa and Doug toys-they have wooden fruit to slice with a wooden knife, and a variety of activities like that.
I really hope this helps a little. It is a kind validating way to interact. Memory books with pictures of favorite tools, garden produce etc can also be comforting, but you have to go through it with them. You cannot just hand it to them.
One more thing, the further into the dementia a person gets, the more creative you have to get. If they are restless and can walk,just walk with them holding their hand if they will let you. If they are non responsive, you can use mirroring, music to help them feel safe. No matter what they are doing, they are communicating something.
No matter what please do not discount what they are communicating with things like “You can’t go home@
Read easy stories to her...Read the religious things she remembers, as for example, Psalm 23 (The Lord is my Shepherd, I shall not want.)
When she jumps back on the "go home" wagon, listen politely and then say something like, "Guess who I saw at Walmart yesterday...."
To me, the ball is always in the court of the caregiver...Bearing in mind that the burden of the patient is very distressing to the patient, be thankful for the good years and also that God has given you a servant's heart to care for yur love one..
Grace + Peace,
Bob
Many times a person will ask to "go home" it is not home but maybe to a time and place where they felt safe, well, happy.
I agree that the next time you take her to the doctor this needs to be discussed particularly if this is an increased agitation for her.
Just tell her that you want her safe, cared for and that she is safe where she is and cared for by people that know how to care for her. Then give her a hug and a kiss.
The question then is which is less harming: letting your mother know that she won't be coming home or telling her that she'll be coming home soon, when it's clearly not soon.