Wow, all of you dealing with dementia, read this article, imagine both the joy at a fix and the frustration at all the time it took to get there.
https://www.cbsnews.com/news/kris-kristofferson-misdiagnosed-alzheimers-has-lyme-disease/
@lookingforward - The fracture was confirmed by xray. Thankfully it’s the lowest down rib so it doesn’t hurt her to breathe. My brother is there with her and said that she is actually moving around well and it’s just if she turns a certain way that she winces. (She’s not remembering she’s hurt). By 11 am, my brother said she was comfortable with just Tylenol.
May I just vent here, please? This isn’t really related to my mother’s age or frailty, more the function of my being her adult child. My mother’s always been a worrier, and this morning on the phone she brought up a slow-healing bug bite I’ve got. I told her I have it under control – and I do – but she kept pushing about it (did I go to the doctor? am I sure?). So I changed the subject, but she kept at it, telling me since she’s my mother she has a right to know what’s going on. I calmly said that actually, no she doesn’t. (Memo to self, next time I’ll thank her for being concerned and move on.) This led, in only one or two sentences, to my mother saying that I don’t want anything to do with her. If she doesn’t get everything she asked for, she tends to think she’s gotten nothing, and this is exactly how it played out: I don’t love her, I don’t want to be around her, and she’s going to leave me alone now.
So meandering back to the theme of this thread, I’m trying to walk that fine line of taking care of her while maintaining my emotional guard. Someone on the thread @conmama posted about her estranged mother’s death put it beautifully: I think they wrote in terms of respect and duty. It’s a job providing that to someone who’s dissatisfied with it. Well, she isn’t, she’s very aware appreciative. The job is really in giving her the aforementioned respect and recognize that she’s got a right to be disappointed.
My therapist has helped immeasurably. I’m going to spend some time thinking about the things she said about acceptance and take it from there.
My dad suffered from Parkinson’s and in the last couple of years before his death he started using a walker. The problem was, he never remembered how to use it, which drove my mother crazy until she realized that he is never going to remember, period. Thereafter, literally every single time he got up to walk, one of us or one of his aides would bring the walker over to him and instruct him how to use it, where to put his feet, where to put his hands, etc. It’s just the way it was, we had to overcome that frustration that no matter how many times he was told or shown, it didn’t matter one iota. After we accepted the new reality, it just became habit (for us, never for him).
The problem is, as you point out, someone cannot be watched every single second of every single day. In our case we had 24/7 aides in the house for my dad, and my mom rarely left the house, but he still had some falls. We thought it was a miracle that he would fall often and remain unharmed, until his last few months when once he broke his nose, and then later when he broke his hip, from which he died a few days later.
So I guess my message is, with someone who simply cannot remember how to use the walker, you cannot give up reminding them each and every time, it’s just the way it is. And then, of course, is the acceptance that you can do all that is humanly possible but they still fall and get injured, and it’s no one’s fault.
Yes, Lyme, Chronic Fatigue Syndrome, Fibromyalgia and other conditions can masquarade as other conditions and make things worse. It can take a very long time to be properly diagnosed and treated. Even with optimal treatment, results vary greatly.
When my MIL died at 91, she had been in memory care for a couple of years. She was essentially wheelchair bound, which was hard to see, but not sure what the answer would have been. A formerly very intelligent, vibrant person had no capacity to understand anything about walking or walkers. It is such a difficult process at the end for many people and I wish all of you still dealing with these issues all the best.
Just a quick update - My mom’s pain seems very well managed today She actually sounded great (for her) when I talked to her this morning. Staff said she was smiling and active, no wincing or guarding. She sounded very happy. Probably helps that family is visiting! Sounds like they are keeping extra eyes on her while she heals but I know that isn’t fool proof. Trying not to worry about things I can’t control.
My mom fell again today and is in the ER with my brother. He had just said his goodbyes 20 minutes before so she would eat lunch (she wont eat if she has company), and afterwards she fell in the bathroom, into the shower, and badly hit her head. My brother said there was blood everywhere. We’re getting private duty caregiving set up right now and the DON is going to call me to discuss what else we can do since this is two major falls in less than a week while she was with one of their aides. It may also be time for hospice. So glad my brother is still there but he was scheduled to go home tonight. Hoping he can extend if there is something major happened or I’m going to need to fly down myself.
So sorry to hear about your mom’s fall. The scalp is very vascular and bleeds a lot, especially if she is on any anticoagulants. Hope her scans come out ok. Sending hugs.
CT scan was negative. She needed 5 staples but they d/c her back to the memory care. We have 48 hours of private duty care lined up with the option to extend as necessary, which I expect we’ll do. Per my brother, she was relieved to be “back home” and was happy and smiling when he left. Thank goodness he was still there!
I had a long talk with the DON. Sounds like they are doing everything they can. In addition to PT, there will also be home care for wound care/dressing changes, and they will be able to remove the staples once it heals. My aunt will be going up on Friday and will be there at least until the staples come out. (She couldn’t go sooner because she’s having a minor procedure tomorrow). Never a dull moment :(.
This is so difficult for your mom and all of you. It is the cruelest thing when they are so prone to falls that it’s not even safe to walk with someone but they still have the urge and sometimes even have the ability–just not safe. When my dad was in skilled nursing there was a whole activity room of people in that situation every evening. They had velcro lap belts that were alarmed. While they were watching a movie or doing a trivia game you would hear the velcro first and an aide would rush over to stop them. A woman fell right in front of me and broke a hip. She was so fast! Sadder yet was the woman who needed (or thought she needed) to go to the bathroom every 15 minutes but wasn’t safe to go alone. No nursing home has enough staff to take one person to the bathroom that frequently. She was adorable and sneaky, with a devilish twinkle in her eye but still sad. I guess my dad should have had a full time aide on top of nursing home cost. But that’s a lot!!
I talked to the DON about lap belts today but they aren’t permitted to use them as they are “restraints”. I don’t know what the answer is to balance happy and safe.
We try to maintain a sense of humor about it since there is not much to be done to improve things. My mother gets sort of manically obsessive about some activity, in a very lizard brain, “wind up and bump into the wall” way. I have a camera that activates and stores 10 seconds at a time, so I might watch 5-10 little videos in a row, I sometimes imagine the Benny Hill music playing because it feels so ridiculous. This past weekend it was obsessing over her pants. I was at the neighbor’s house, watching her not injure herself and it was pants off, pants on, pants off, dodder around, pants on backwards, just over and over. I have removed those pants from her wardrobe, imagining they are triggering something in her subconscious. It’s really sad, but it’s happened so much lately that we just try to make light of it as I cannot stop it.
We have had 24 hour care for my Dad for 1 month and 2 days, and it has been a full-time job managing everything. My sister came for three weeks during this time, and just left for a well-needed vacation to Hawaii. It almost came crashing down yesterday, as Dad wanted to fire all the caregivers. I am not asking for advice, just saying it is incredibly hard and sad, and I feel for everyone going through all this.
@momofsenior1 Mom’s memory care place used alarms not restraints on Mom’s wheel chair. She was in it because she forgot how to walk sometimes. They were pretty sensitive so they went off before she was actually able to get completely to her feet. They did a pretty good job of having a person in sight of all the residents at all times so that they could get there when the alarm went off. Mom had had several falls and the alarm seemed to help a lot. They alarmed her bed, too.
About a year ago, after pneumonia, my dad was very unstable and was falling a lot. His doctor was afraid that the Memory Care would require a full time aide. He started physical therapy and really enjoyed it (he has always liked to exercise). Since he is out of visits we pay for two visits a week, out of pocket. The PT started taking him to the gym on the Assisted Living/Senior Living side of the facility. He loves it (and can obsess about it). So one of the regular staff will take him about once a day. It is amazing how much better he is walking, etc… My dad resists EVERYTHING (don’t get me started about showers, haircuts, shaving, etc…), but for some reason he loves exercising.
My dad’s MCF used an alarm/restraint combo. His wheelchair had a seat belt that buckled like those in an airplane. When opened, an alarm would sound. They explained that this set up was OK as long as Dad knew how to open it. (He could actually only open it if you showed him how). When they first installed the belt on his wheelchair, it was upside down and on the side near his hip which made it challenging for him and us to access/open. We were a bit dubious of their explanation when, after learning that their annual state inspection was imminent, the MCF “coincidentally” replaced the belt so that the buckle was front-and-center and right side up. We never complained because we felt it kept Dad safer from falls and the belt did not seem to upset him. To the contrary, it seemed to give him a sense of security when it was buckled. Happy and safe, but possibly non-compliant?
@BerneseMtnMom that’s one reason we hired a professional advocate. She manages all of the caregivers and takes care of any issues that come up. Dad has had 24/7 care since June 11. There’s no way Sis and I could have handled everything by ourselves.
At my parent’s care home, my dad was having falls when they first moved in while mom had an increasingly series of severe falls, most of which included hitting her head. I do believe it was part of her rapid decline in the couple of months leading to her death (perhaps a slow subdural hematoma or more rapid dementia as a result of head trauma). I don’t blame the home. One of the falls happened when she was with my husband on a walk. Fortunately, a neighbor saw her fall and able to help him get her up and back to the house.
With my parents high physical activity and strength but demented, the observation of the home with 24 7 caregivers and cameras help prevent a lot of falls, but can not completely eliminate the falls. Restraints are not only allowed, but something I wouldn’t want as they would be like caged animals. I’m just happy someone is there when a fall happens so they have assistance and can be assessed for injuries. Previously, when at independent living, falls would happen, and because they can get up on their own, and they would forget they fell, I wouldn’t know about it other than seeing the bruises. If a neighbor witnessed, they would call the director who would then let me know. As others have noted, my mom could not be taught to use a walker.
The Kris Kistofferson story is sad and I wonder how many others might have Lyme instead of Alzheimer’s. I send all my patients less than 75 with dementia symptoms to neurology to “rule out” other illnesses. They have never checked Lyme titers. Perhaps this is something I need to add to my primary care practice. I’m moving to a faculty position and I’ll make sure I tell my NP students to consider adding Lyme in the differential for any patient with signs of dementia. With both my parents having dementia, I wonder about some environmental toxin that effected them both.
@GTalum, alas there doesn’t seem to be a good test:
The Challenge of Diagnosing Lyme Disease
The biggest problem is that there is no way to test, unequivocally, for the presence of the bacteria that cause the disease.
https://www.nytimes.com/2019/07/29/well/family/the-challenge-of-diagnosing-lyme-disease.html