Putting Your Loved One First Might Mean not Telling the Truth
If your Loved One has been diagnosed with any type of dementia, or if they just get confused sometimes, it may be tempting to correct, re-orient, or tell them the truth of their actual situation. I would like to give you a few things to consider before you decide to, essentially, tell your Loved One that they are wrong.
Before I continue, let me stress the importance of discussing these issues and questions with your Loved One’s medical team to ensure you are considering any special circumstances that may apply.
My Beloved Aunt Esther, who you will hear a lot about, was diagnosed with dementia. When discussing the situation with her nursing staff in the memory facility, I was told that I should always meet her wherever she was – whatever time period in her life, whatever location, and whatever her reality entailed in that moment. I was told that trying to reorient her to the current time and date was self-serving and potentially selfish.
Think about it – if they are happily living in a different time and place, then who does it serve to burst that bubble they are in? The need to correct them is not for their sake. It is you that is likely sad, distressed, or even angry, that your beloved parent or person is not sharing your current life. It is normal to be upset and sad when this happens and is to be expected. It is, unfortunately, another sign that your Loved One is deteriorating and is moving further away from their previous role in your life. But trying to force their brain back into the present? This might work for a day, a week, but the emotional distress it may cause isn’t necessarily worth it.
Another thing I learned from those nurses was that, when people are confused or have dementia, they probably won’t remember your words, but they will definitely remember how you made them feel. I am betting that, like me, you would do anything to protect your Loved One’s feelings and save them emotional distress. If that is indeed the case – then join them and do NOT correct them! You will get better at it as you go along, and practice makes perfect. You will hopefully develop your quick wit and sense of humor.
Later, Esther was in Vermont with us and at the rehab, my mother (Esther’s sister) called me in a panic because Esther thought she needed to get dressed and go to work. I told my mom to tell her she had the week off and was on vacation. Mom reported back that Esther said she had to go in to pick up her paycheck. I told her to let her know I had already gotten it and deposited it for her at her bank. She said she needed to check that the amount was right – and I responded that I had checked to make sure it was for the amount that she told me about and it was correct. So, all was well. Esther was relieved and went back to visiting with my mom.
One time when Esther was still in her nursing home out of state and had to be taken to the ER for her broken wrist she was all alone because they could not send any staff with her. I had called one of the women who were my right hands in her care, and she immediately went to the ER to comfort her. Esther was so relieved when she saw her – she told Wendy she was upset because her parents hadn’t arrived yet. Did Wendy tell her they had died decades ago? And make her feel horrible and have to grieve them all over again? No – instead she assured her that they loved her, wanted to be there with her but were on vacation. They had heard about Esther’s fall and asked Wendy to come be with her since they couldn’t get there. Again, problem solved, and she was assured that she was loved, and all was well.
It’s not always dementia
Sometimes, your Loved One may not have dementia but intermittent confusion, like my dad did. He knew who we all were but didn’t always know where he was or what period it was during his lifetime. One of the biggest regrets I have is when I tried to re-orient him one day when he believed he was outside in the rain and wanted to be brought inside.
I could have assured him we would get him out of the rain or I could have tried to change the subject or distract him. Instead, I thought I would re-orient him. I tried to get him to feel the bed beneath his body and feel the sheets around him. Instead of making him come to the conclusion that he was already inside, I upset him. “Lili Christina, I am still your father and if I tell you I need to get out of the rain I do not expect my daughter to argue with me!”
WOW. Did I feel horrible. He never raised his voice while we were growing up and what had I done? I had just made my father feel like a fool for telling me where he was and disagreeing with him. I immediately apologized and assured him we would get him inside and dried off immediately. 11 years later and I still remember that moment and the sound of his voice full of disappointment, hurt and anger.
Please learn from my mistake. Wherever your Loved One is – be there with them! It may take a little bit before you become comfortable with the small lies but remember, they are the kinder solution to a very difficult situation.
Another time the nurse called me to let me know my dad was very agitated and they could not figure out what was bothering him and asked if he wanted to talk to me. He said yes and when I got on the phone with him, I asked what was wrong. I had learned my lesson from before so when he told me he was worried about the big snowstorm coming I didn’t tell him it was June – and there was no snowstorm. Instead I told him I had heard it was coming and would be happy to drive out and shovel the drive way while he worked on clearing it with the snowblower. He was immediately relieved and very grateful. His problem was solved, and I got to be his hero instead of the difficult daughter who disagreed with him.
Part of the time Dad was in the nursing home, in the full care wing because he couldn’t stand or move very well, our Mom who was not well was on the assisted care side of the facility. One day I made the comment that I was going to go visit mom in her room. He immediately became very alarmed and said “Lili – that is impossible – women are not allowed in the seminary dorms!” I laughed and told him I misspoke and that I was talking about her room in the hotel down the street. Again, problem solved. I didn’t ask him how I as a female could be there – I just agreed with him and solved the problem at hand in his mind.
Different ways to work through sticky situations
Sometimes your Loved One may ask to speak to a spouse, parent, or someone else who is no longer on earth. Unless they specifically ask you if they are living or dead – Do NOT tell him they are dead. Instead, you can say they are on vacation and can’t get to a phone, but you will get their message to them. You can also ask if they want to dictate a letter to them. Later on, after their gone these letters may mean so very much.
The odds are that once you have finished writing down their thoughts, they will be onto the next subject. They may even later remember that this person is no longer on earth. But do not remind them of their earlier request, this will only make them upset that their brain wasn’t working right. Kindness and understanding is the only thing that matters.
You can always try to distract them with a question on a different subject. Ask them about their favorite memory from their life. If they are less verbal, you can tell them you want to watch their favorite TV show with them and talk about watching it with them before. You can always try the subject of sports or traveling since those things touch most people’s lives at some point.
I had one client who’s Beloved Uncle always wanted to go for a walk. He was bedridden but kept insisting they go for a walk, so we got creative. She would pull back his covers, swing his legs over and then spend 5 minutes talking to him about other things. Once he was distracted completely, then she would act as if they just came back from their walk. She would tell him what a wonderful walk they just had and how he must be tired and need to be settled in bed to rest a bit. She would pivot him and put his legs back on the bed, cover him up and offer water to get his thirst quenched after his walk. He would smile, be happy and relaxed thinking that he had accomplished his goal! Another win -win!!
Had she told him he couldn’t physically walk or leave his room, the poor man would have been devastated! Was it a charade? Yes! But was it a loving way to handle the situation that left his happiness and dignity in tact? Absolutely!
If you have a hard time with these concepts, then please talk to your Loved One’s doctor or a therapist about it. How you feel matters, too, and it is important to reconcile what is going on with your Loved One with whatever your feelings may be. Ultimately how to deal with these moments are your decision, but please take my words to heart. I would save you the lesson I learned from correcting my dad and hearing that pain in your own Loved One’s voice.
For myself, I will always believe and recommend that we always act on the most loving thing that we can do for our Loved One, even if we are a little uncomfortable. It will keep you safer from having regrets years later. And trust me on this, they are still hard to stomach over a decade later.
When I would tell the truth
The times that I am honest with a Loved One who is struggling with dementia or confusion is when asked a direct question about a person or their circumstances. If your Loved One asks you if someone is alive or not, then you know they know somewhere deep inside that the person they asked about is not alive. The loving thing to do here is to confirm what they know or suspect.
If they ask you about their confusion or dementia, it is best to tell them the truth. Yes, they are having these issues and it is not their imagination, but I think it’s important to say that it is not their fault!! This is the disease, and they are not to blame. Again, validating their feelings and lovingly explaining that it is not their fault.
These conversations can be very draining so be sure you are taking extra steps to take care of yourself and your Loved One with extra nurturing when they are asking such direct questions. And if they are not so direct, like where are my parents? Ask them where they think they are and follow the clues that they give you.
If they think they are dead, then confirm, and if they think they may be elsewhere confirm that, too. You want to always validate, solve their problem and make them feel loved and secure, as that is ALWAYS the ultimate goal for all of us who are caring for our Loved Ones.
Much love,
Lili