Awhile ago I posited an important question on here. To recap, my original instincts and plan with Cindy was to hide from her that she had Alzheimer’s, to foster the hope with which we might deal with her affliction. Our primary care physician thwarted that plan, calling us both in to reveal the truth of her condition.
I was angry about that at first, but two immediate advantages surfaced from knowing the truth. We resolved to pursue a bucket list of dreams, including the PCT hike. Cindy also started preparing herself around the truth in a positive way. With good cheer even she started sorting through things in the attic that she wanted to go to her children. She was down at times over the reality of why she had trouble functioning, but she used to get down over the mystery of those same troubles as well.
Cindy was in favor of sharing her journey on this blog and with the people we met during the journey. However, after a few weeks she thought no one could tell there was something wrong with her and there was no point in sharing that when we first met someone. Then, after a few weeks more, she no longer knew she had Alzheimer’s. That’s when I asked the important question of whether I should continue to let her know what her affliction is.
Two folks responded that I should not, which coincides with my original instincts. I have not reminded her at all. When she gets down about having trouble functioning, it’s over the mystery and not the reality of what’s wrong with her.
Lately the mystery extends to Charissa and me. The times when Cindy would get down were fairly predictable: when we broke camp or were otherwise involved in sustained activities where she couldn’t help; or when tough trail conditions were kicking her butt. That has changed.
We are in the midst of our “coastal tour” before we resume hiking in Southern California. In the absence of breaking camp or tough trail conditions, there are times each day when Cindy gets down with or without apparent cause. I say “apparent” yet we have the overwhelming sense that Cindy knows something is wrong with her, that just knowing that gets her down, even in the midst of a leisurely stroll through majestic redwoods.
I am back to wondering if Cindy should be aware of the truth. She handled the truth positively before, allowing her to tackle the future with good cheer. She is, after all, a wonderfully positive person, as all who know her will attest. Is it kind or cruel to keep from her the cause of her mysterious troubles?
This journey has been full of tough decisions for me and I toss this question out again for sort of a second opinion. Has anyone maintained the truth with bad consequences?
Thanks in advance for your help.
Kirk,
Your question brings to mind a story a friend told me. My friend’s mother had Alzheimer’s. My friend is a financial advisor and was meeting with a couple who had brought an elderly parent in with them. The parent was obviously suffering from Alzheimer/dementia. During the course of the meeting the parent would ask where his wife was. The couple would tell him sadly that she had died a few years earlier. The older man would looked startled – like he’d never heard the news before – and start to grieve his dead wife. This happened a couple of times during the meeting. As the meeting was ending, my friend took the couple aside and asked if they would like a little advice. They said yes, and my friend told them her mother had done the same thing. She started telling her mother that the father was ‘at the store’ or would ‘be back soon’. The mother was satisfied and was content. The mother was saved from having to repeatedly re-live the grief over the loss of her spouse.
In your case, I think it was wise to tell Cindy she had the disease at a time when she could still make decisions and prepare for what was coming. At this time, I would say to tell her again. See if it helps. If she feels better about having the true explanation, continue to tell her. If she gets confused and/or saddened by the information, it may be time to resort to a white lie. Maybe she’s ‘overtired’.
My unprofessional 2 cents.
Good luck.
Thanks Leslie.
Dear Kirk,
I have been following your Open Heart Journey with awe. It’s huge enough that you are living it, but to take the time and energy to write about it and share it with us is even more huge.
As to your question, nothing productive will come out of reminding a person with Alzheimer’s that she has Alzheimer’s. Although, as you say, Cindy will go through times of distress and frustration about her condition, the best thing is to respond to her feelings with comfort, reassuring touch, acknowledgement, and love. I remember one heartbreaking moment when my father was at the dining room table having lunch. He pounded his hand against his head, literally trying to make his thinking clear again. He was desperate to fix what was wrong with him. He looked in a nearby basket and picked up a piece of clean laundry asking me, “Will this help?” I learned to meet him where he was (it didn’t matter if what he said wasn’t true. In the beginning I corrected him, but later, I met him in his world and went with it.). I used to get so angry at any family member who lost their temper with him, and then five minutes later, I would lose it. Caregiver and patient are both pushed to their limits in this disease, and it is agonizing and wrenching.
I got good at redirecting Dad, but that didn’t always work. If you can do that, even if you say things that aren’t true (that was another thing I had a hard time adjusting to), if it’s in the service of helping to restore calm and/or confidence or to comfort Cindy.
Bob and I send you, Cindy, & Charissa love and wish you smooth trails.
Jill
Thanks Jill
Hi Kirk,
I think the truth is best. She will perhaps be fearful or sad but that is why she has you and the kids and her friends. She is living her dream. She always told me this is something she wanted to do……..
What else would you, or she, do differently?
Hope you all received your pkg. I think Mohave rings a bell !
Happy trails, its all in the name of Love
Blessings,
Kim
Thanks Kim. We have not received your package yet.
Hi Kirk.
I do not see the purpose in telling her of her illness. She will not remember it anyway. It may cause her more grief and maybe even to give up. She is doing the best she can under the circumstances and that is all that can be expected.
As a counselor my observation of the original diagnosis was proper. But clearly do not see the purpose of reminding her. When she cannot function, just let her rest and support her in whatever she can do at the time. What patients need the most is hope, telling her or reminding her may take some of that hope away and she may not want to continue trying, My advice…do not take her hope away.
You are a blessing in her life and in the lives as others. Just your sharing and being an example of love, hope and genuine caring is of indispensable support to her and others. I believe that patients know this at a subconscious level. The body always remembers while the mind may forget. It is a natural function of survival. There may come a time when she will not be able to function physically and may become bothersome to her. But until then…just keep on trucking.
I am sure that you are using all the techniques available to you. Just in case one thing that I found helpful is keeping a list of what will be the day’s agenda. Review it with her. Pin it on her jacket or put it somewhere she can see it or feel it. This may give her confidence. The confidence may push her to do more for herself. I do not know the stage she is in…so this is just a suggestion. Many patients turn back to their childhood years, to a safe and happier time, They begin recollecting events, places, persons and things that meant a lot to them. Use these events to help her flourish…some patients even like to play childish games…just don’t play hide and go seek! She may get lost. But simple things like just sitting on the ground looking at the leaves of a flower or tree leaf or even ants can be amusing and fun. You may discover a whole new world for yourself too. Enjoy it…keep the love coming and it is in the simple things that we do for each other that we find what God wants for us…always be positive even when it is difficult…repeating information and helping someone with bodily functions’ is not easy…I know from what my husband Al has said of you, that you can do it. May God bless you and I hope that this has helped some. You are welcome to write to me if you please.
Freyda Strackeljahn
My mom has had this disease for many years. At one point her cognition was acute enough to recognize that she was losing her mental faculties. Before that point she had not been told so not knowing what was happening to her was placing her in a precarious mental state. She thought that she was going insane. Seeing this I did explain to her that this was a disease and her medication would slow the process down and that she was not going insane. I also told her that only death could keep me from taking care of her through the remainder of her life and that she would never be left alone. It took a while for her to adjust to the reality of the situation but overall it was the best choice. At that time in her life she needed answers. She understood and at some level she remembered and made peace with it. She is now 94 years old and her cognition has rapidly decreased. She still remembers me, for now, but has forgotten most of her life. I serve as her memory.
Thanks for sharing that.
Thanks Freyda