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Post by gato on Apr 7, 2023 8:22:31 GMT -5
Your mom asks plaintively, "when is your dad coming home?". For the fourth time that day, you gently break the news that dad died 2 years ago, sending your mom once again, into a well of despair, sobbing uncontrollably.
This is the situation my friend "Vivian," found herself in as her mother's dementia inexorably took hold. Determined to keep mom at home, she and her two sisters, took turns helping their mother navigate a world that became increasingly unfamiliar, and only telling her only the truth. (If she asked "why am I the only one cooking meals around here," the truthful answer was that she hadn't cooked a meal in months)
There are, I've learned, two distinct paths to choose between, when dealing with someone who has dementia. The first, that has been accepted for decades by most medical professionals, is that of truth-telling. (Telling mom over and over that dad died)
The second is called therapeutic deception (an earlier concept was called validation therapy). Taking this path, you would assure the parent that the deceased dad is due in a couple of hours. A few hours later, when the previous conversation has been forgotten, the same question gets the same answer. The theory being that retelling an awful truth is unnecessarily cruel, if it is put forward repeatedly, only to be forgotten again.
At the end of his life, my dad did not recognize my brother or me, and had no idea that he was in a nursing home. By then, along with dementia, he was dealing with advanced Parkinson's and congestive heart failure, so there was no going home for him. But if he asked these strangers (me and my brother) when he could get back to the house he shared with his wife (deceased 20 years before), we just told him "soon."
It's not easy becoming the parent of the parent, deciding when to take the car keys, when to hire a home healthcare aide he doesn't want, or to place him where he always declared he would never end up.
So .... well meaning deception: acceptable or without merit?
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Post by Peegoo 🏁 on Apr 7, 2023 8:39:02 GMT -5
You do whatever works best for the person.
The best way to deal with this that I've found is distraction, especially with things the person really likes (cookies, candy, a cup of their favorite soda, etc.). At this point in their life, maintaining a healthy diet becomes a distant second to finding ways of reducing their grief and helping them stay happy.
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Post by Leftee on Apr 7, 2023 8:42:02 GMT -5
I think that whatever path is done in love would be best.
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Post by RufusTeleStrat on Apr 7, 2023 9:58:31 GMT -5
It is almost a 6 to one half dozen the other choice. Full on dementia presents differently each person, but I am unsure of the benefit of multiple times a day making them relive the grief of the realization of the loss of a loved one. If it is as it appears to recede from concern, and a temporary repetitive focus point, I think the softer deception is less cruel, and more palliative to the patient.
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Post by oldnjplayer on Apr 7, 2023 12:34:55 GMT -5
We dealt with my MIL dementia with kind deception. She would accept the answer and move on until she needed to ask the same question. It was really easier on her than trying to force the "truth" on her. I saw this done with multiple residents in the Memory (dementia) unit she was in. In truth there were some interesting situations like the women who always asked when that damn husband of hers was coming home from the gambling party he was at or the women who always wanted to know where her bus was. None seemed any the worse for being told these kind deceptions.
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Post by Taildragger on Apr 7, 2023 13:28:22 GMT -5
It's not easy becoming the parent of the parent, deciding when to take the car keys, when to hire a home healthcare aide he doesn't want, or to place him where he always declared he would never end up. Amen to that. After my mother died, my disabled dad lived with us for 2-1/2 years (at the start of which, we also had our own two kids still in diapers) then for another 2-1/2 years in a rest home. Later, after my wife's mother died, we had to ride herd on her dad, who became progressively more difficult and obstinate. Sometimes, he misbehaved much like an attention-seeking child. During that same time period, we were also dealing with our two, then-teenaged daughters and their "issues". Certainly nowhere near combat-level stress, to be sure, but these sorts of life situations do present their own sets of challenges. Sometimes the choices available are not so much "good" or "bad" but rather "not quite as bad" or "very bad". I've long likened "end of life" situations to "getting painted into a smaller and smaller corner", with an ever-diminishing number of good options from which to chose. This is true for both the person whose life is coming to a close and for those who are trying to minimize the unpleasantness of the process. It can create an after-the-fact feeling of having failed to "do all that could have been done" in a caretaker, which then unfairly piles guilt an top of grief after the person/patient passes. It's important for that person to not beat themselves up: when the the patient has degenerated to the point where trained, medical and/or psychiatric personnel have exhausted their tools, it becomes unreasonable for a layman to fault themselves for "not having any more answers". |
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Post by rok-a-bill-e on Apr 7, 2023 14:54:38 GMT -5
The very worst single day of dealing with my Mother's dementia was when she asked when her sister was coming to visit and I thoughtlessly told here that "oh Mom, you know that Doris died four years ago", and my Mother began weeping. A caregiver explained to me that now she had to go through the grieving process all over again and I sat there while she cried feeling lower than whale xxxx.
They are not in reality, so don't throw harsh realities in their face. Say whatever gives them comfort, because moments of comfort are all that you can give them now.
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gbfun
Wholenote
I eat cookies to provide you with the best possible experience.
Posts: 463
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Post by gbfun on Apr 8, 2023 5:22:28 GMT -5
My Dad couldn't feel his feet for decades, thus, he drove erratically, always pumping the gas pedal too far down, and too far up, making for a jerky ride. There came the unexpected day when I found out he'd recently had a second fender bender...this time in a parking lot. I gently suggested he should consider giving up his keys due to his health and multiple accidents when he was 78, and he was furious. I carefully considered my prospects of inheriting something, and made the choice to withdraw from being the "parent" ever again. Luckily, no one was hurt and perhaps he got religion and was more careful because of my challenge. Still, it might be better if seniors had more detailed, EXTERNALLY determined, driving tests after 70...including for myself. I doubt children taking away the keys from their parents is the best way to go ! Yet this has all sorts of complications. Life is hard. Thankfully, my parents and grandparents handled their affairs for minimal impact to their children. And I inherited. But I saw enough of dementia and disability and cancer to know I dodged a bunch of bullets. Hopefully, I can check out clean too. I think I'll give up my keys someday. We'll see.  |
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Post by Taildragger on Apr 8, 2023 12:22:32 GMT -5
Losing the driving privilege is such a big deal since it amounts to a huge loss of mobility/independence. It literally makes a person's world shrink.
At 74, I think about this from time to time, though I have, as yet, had no diminished capacity in that department (based on the fact that I still have a spotless driving record and haven't been involved in an accident since I was 17). Not being able to drive would pose a significant problem for me, mainly since groceries are not really available within walking distance and both of our kids live 400 miles away (so they aren't available to help out). There are other reasons why being unable to drive would be a major inconvenience, but it's an eventuality that we'll all have to face, assuming we live that long.
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Post by RufusTeleStrat on Apr 8, 2023 12:37:41 GMT -5
I have unfortunately been the one tasked to break this news to three different elderly relatives. Two were clearly unable to initially grasp the seriousness of the danger they posed to others.
The last one was easier, as my 92 yo MIL had a car die. It was a hybrid and the battery kicked the bucket. When presented with the option of a 12k repair, or replacement with a new car, she attempted to get a car. The supply chain and all made this next to impossible, so a better option for her was a golf cart for in the neighborhood (carts are ok in our neighborhood on private streets). She from time to time still says I miss my car, and I remind her that at 90+ she might not be driving on the freeway or where other humans are present. We act as her uber, otherwise she is fully independent in her own home.
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Post by LTB on Apr 8, 2023 12:43:13 GMT -5
We dealt with this with my mom before she passed away. I agree that sparing them from cruelty of truth over and over is preferred here. Distraction also worked when once she was fast approaching my then 14 year old daughter from behind with a doubled up fist I quickly stepped between them, pulled her close in a hug and said “Mom, I love you”. That averted a situation and got her mind on something else.
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Post by Vibroluxer on Apr 8, 2023 12:50:53 GMT -5
When I was earning my RN back in 2005 we were taught to tell the truth regardless and I did while going through school. But in reality, as Peegoo said, it all depends. My only advice if you choose the easier path is to be consistent, with all caregivers, with the given reply. You can't really have one person saying "you cooked yesterday" vs " you haven't cooked in years."
Mt Grandmother had dementia. One day, in early December, my mom gave her a stack of Post It's and an LL Bean catalog and told her to pick out presents for everyone and mark the page with a Post It. So she did
When she was done, my mom and she went through the catalog to see what she selected for each family member. When they were down to 1 post it left, mom asked her "Who's that for?", she replied "For Pap. He needs one of these.". My mom said " Mom, paps in heaven." And without missing a beat, Grandma turned to the last page of the catalog and pointed to "...we deliver everywhere.".
Gotta try to find the brighter side if that terrible curse.
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Post by slacker 🐨 on Apr 10, 2023 7:54:50 GMT -5
I've been down the dementia path with my dad and we're going down it now with my wife's father. With my dad, he got to a point where he was really mean. We were trying to keep him at home but he went through care gives like water. He ulitimately ended up in a home (he never wanted to be in a nursing home), but by then he didn't really know where he was. Visiting was the most depressing thing. I had to really force myself to go because he either didn't know who I was or, later, didn't even know I was there.
My wife's father is at the point where he can mostly function, but he can't remember anything. He has a system where he puts post-it's on the kitchen table to remember things. He saw a note that he had a doctor's appointment the next day. He called my wife and said he wasn't feeling well and didn't want to go. He said he was so sick he could barely talk but was talking just fine on the phone. My wife said "well, it's too late to cancel today, I'll drive out in the morning and we'll see how you feel then." The next morning he'd forgotten that he didn't want to go. His favorite dog died a couple years ago and we adopted a rescue for him last summer. He really likes the dog (which we'll take in the event we lose him before the dog), but he cannot remember the dog's name. Constantly calls it by the name of his previous dog.
We're really close to having to make a tough decision with him, but my BIL is resisting. He did the same thing with his mom. My wife was driving out there 5 days a week to care for her (quit her job to do it) and it was physically more than she could do, but BIL didn't want her in a home. My wife finally called a nursing place and they came to evaluate....immediately said she belongs in hospice care. She passed 5 days later. She was mentally gone due to radiation on her head for cancer (we regret that treatment to this day).
I always though dealing with aging pets was bad...dealing with aging parents is far worse.
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