My spouse wants to go home most evenings or afternoons. In asking her about "home" she told me that it is where family and friends are located. The pandemic and her stroke distanced us from from most friends and most family live 1000 miles away. Love to hear what anyone else is doing. Thanks.
My mom is a person of deep faith and I have tried to provide the same spiritual comfort for her as well. I'm thankful for the hospice chaplain who always knows the right things to say when I find myself at a loss for words.
God bless you and may you find comfort in the fact your mom is with Him and is no longer suffering.
https://youtu.be/tYNxcXLwZjA?si=7yqXbr7GsmHuhYAH
I don't know what this IRIS is that you keep mentioning but caregivers coming into the home have been responsible for neglect and abuse as well.
When my mum was first diagnosed with vascular dementia, I was gentle but truthful. Now that she is far along in the disease, I use the therapeutic fib. There is no easy answer.
not too much you can say apart from mum you’re not well so the doctors want you here where they can look after you BUT I am arranging a video call with xyz
there are conference facilities that can link many people calling in to the one call - maybe they are available linking people via mobile phones now?
just a thought - good luck
“I Want to Go Home”
Over time, as it becomes harder to find the right words, the patient will rely increasingly on word substitutions. Sometimes, a word is just meant as a placeholder in a sentence, like saying “Give me my pants” when they want their shoes. At other times, it is the feeling behind the words, rather than their literal meaning, that is intended, for example, “I want to go home.”
When the patient says that they want to go home, this is not always due to confusion. Rather, the patient may be expressing a desire for love, peace, comfort, and security that they associate with home. When the patient feels anxious and isolated, when they feel that no one understands them, that everyone is reprimanding them, bossing them around, or asking them to do the impossible, “I want to go home” expresses a need for escape to a familiar shelter, a longing for the warmth and security that they associate with home.
· Do not try to convince the patient that they are already home. Instead, look for the sentiment behind the words “I want to go home.”
· Apply the techniques you’d use to get to the root cause of behavioral problems. Look for unmet needs, environmental issues, and problems with patient-caregiver interactions.
· Are the patient’s basic needs being met? Is the patient hungry, thirsty, or in pain? Are they bored? Do they have an infection? Are they constipated, or do they need to go to the bathroom?
· Is the environment comfortable? Is it too warm or too cold, too bright or too dark, too noisy, or crowded?
· Are patient-caregiver interactions thoughtful and comforting? Does the patient feel safe? Do they feel loved, cared for, and accepted? Are they comforted with hugs, caresses, companionship, and words of encouragement?
· Go with the flow and redirect. Say something like, “Okay, we’ll go soon,” and then distract the patient by doing something pleasant that takes their mind off of wanting to go home.
I believe you are on target with the comments about making him feel loved and understood, while trying to have him "understand" that I can't take care of his needs adequately. He is 87 and I'm 76. Thank you for your insights, they will be very helpful in responding to "Home".
Diane
Your wife may be seeking physical or emotional comfort of some kind when she asks to go home. She cannot express what she needs in words, most likely, so some detective work on your part is required. Offer her a hug, a back rub, a cookie, a blanket, etc. See if she needs to use the bathroom.
Telling your wife she already IS home is the worst thing you can do because it's dismissing how she's feeling and reinforcing that her discomfort will not be addressed. If she doesn't recognize her environment as 'home' at that moment, then for that moment, it isn't home.
The simple truth is not often recommended with dementia because we are applying OUR code of ethics to THEIR damaged brains which require and seek comfort to stay calm. Therapeutic Fibs are recommended as needed and shouldn't be looked as as "sinful lies" but common sense logic, given the disease at play.
If your wife is cognizant enough to do phone chats, perhaps a call to family and friends would help comfort her. Mild calming meds can work wonders during Sundowning in late afternoons. My mom did well with Ativan.
While Sundowning, my mother would tell me she was riding the subway (in Colo) to go home (to NYC) to see her parents and siblings (all long gone). I'd offer her her a snack or ask her to tell me about the house.
Wishing you the best of luck with a difficult situation. It sounds like you're doing a great job!
You can either just say that honey you are home and change the subject, or perhaps show her pictures of her childhood home and family.
And if this is coming up in the late afternoons and early evenings, it's more than likely part of your wife's sundowning. You can talk to her doctor about that as there are medications that will help with that.
So far, I said it depends on when the doctor says they are strong enough to go home. Then I feel bad because they will then say they want physical therapy so they can get to that point of being "strong enough". So I think I need a different answer next time.
I like what Alva Deer stated. I think honesty is the best policy. It is also the one that we will never have to rehearse or prepare in advance. As I read what she stated, it seems to also be the one that makes me feel most peaceful about not misleading them or giving them false hope. While difficult, it is something that will not keep me awake at night ruminating over.
Also, as Alva said, I think there might also be an aspect about this that we want to make them happy and fix things and make everything alright for them. It is what we have always done. I think the reality is that this is now out of reach of what we can do. With dementia and having a progressive condition, I think will would go in endless circles chasing the unobtainable.
I do also like saying something about having moved before and made new friends before, so it can be done again. This IS home right now, and all the needed support is close by, and they are safe.
I also expect this is going to be a repeat question and answer exchange, so hope it rolls off my tongue a bit easier at some point.
Caregiver- loved ones often take on a need to make their spouse or parent "happy". Sorry to say that is a burden that is best not assumed, because there is no "happy" in aging, dementia, and the losses that come with it. There's only enduring, and saving what we can.
The one thing that is owed us, I believe, is honesty. There will be grief when you are honest. And if this isn't worth grieving, I don't know what is.
So it's "Hon, this IS home for you now. Family is off on their own and all grown up or moved or left us for good. You need more care than I can give you at home; so this is home now, and I hope you can can make new friends here. That's something we've had to do before. I'm so sorry. I know you are sad and that makes me sad, too."
Do know that staff will likely tell you that it is the closest loved one, the caregiver, who the senior suffering dementia will most hit with the complaints of "Take me HOME". When you arrive you are seen as the savior. The one who can do it all for her. And you can't. That's the sad part.
I am so sorry and I wish you the best, but like so much in life, this just can't be fixed. It can only be endured and mourned.