I haven’t posted in awhile. At this point, my mom has been in an assisted living facility for four months. She thinks she is adapting well, I quietly disagree. She still refers to it as being incarcerated, and after we are out together for a day, her stress level visibly increases as we pull into the parking lot. She is socializing with people but spending the majority of the time in her room, by choice. She was a loner before she came here, so this is not unexpected. I would have expected my own load to decrease significantly once she was settled in AL, but that has not been the case. We communicate every day by text or phone, and I see her 3 to 4 times a week. I also volunteer there twice a week running a crafts class and an exercise class. While my doing this benefits her in general and she attends both classes, I know she resents my spending time with the other residents and not specifically with her, even though I visit with her separately in those days as well. I am trying to protect my days away for my own sanity and health, but she has developed a pattern of hating on me on the days I don’t see her, and letting me know how little I think of her or care about her welfare. She refuses to use the services because they aren’t “clean” enough (this is a very nice facility), and she wants me to do her laundry, wash her hair, and she has asked to use my shower but I’ve drawn the line on that. It has been absolutely exhausting and very frustrating. At the same time, I can empathize with her personal battle to retain what’s left of her independence while her brain and body are slowly betraying her.
My current dilemma is her health. She has had a number of symptoms since arriving. Lightheadedness in the beginning, gut issues as of late, and most recently, the sense of being feverish and feeling like she’s “burning up”. She doesn’t have a fever, and we have been to her NP several times. I personally believe these are all manifestations of stress and anxiety, and the NP seems to agree as she has found nothing wrong. I know it’s always possible there is something undetected going on, but for what it’s worth I’ve seen her blood work and her numbers are quite good, and better than they’ve been in several years. I’m admittedly anti-drug and believe problems should be resolved via nutrition and physical activity whenever possible, but I feel that she could really benefit from a sedative. She is already on the lowest dose of trazadone, but that has had little demonstrated impact on her anxiety. The NP prescribed Arisept following our last appt, but I have been reviewing the clinical studies and literature available and am not impressed. I personally don’t think this is the way to go, as she has demonstrated great sensitivity to meds in the past (it took two years to get her heart meds squared away). I think hitting her with new side effects now would push her over the edge. I have been frustrated with the doctors’ cavalier attitude in the past with regard to “trying” new meds and swapping them around with little regard for the impact on an aging body. After “trying” metoprolol for a few weeks last year, my mom’s memory took a severe and permanent hit. I don’t see enough evidence in the literature that Aricept will help her long term. I really feel she would respond best to a straight sedative. My question is whether there are effective sedatives that won’t exacerbate her memory issues or cause a boatload of other side effects? Her memory is very poor right now, in fact she often can’t retain what I told her five minutes prior. Dementia is still relatively new to me and I am slowly navigating my way through it, but my gut tells me that her early stage dementia is causing her a great deal of the stress, and the stress is manifesting in various physical symptoms and her lashing out at me while simultaneously clinging to me like a child.
I would appreciate any guidance you could give. Many thanks to this wonderful community.
The fact that you visit her 3-4 times a week, plus volunteer several days at her facility is way too much time with her. Of course she doesn't have to interact with the other folks there as you are pretty much there all the time.
I would perhaps cut back on your visits to just once a week, and limit your phone calls and texts to just a few days a week as well. There is no reason that you must text or talk every day. If there is an issue the facility will contact you.
I can understand you doing her laundry as often times otherwise her clothes might end up in someone else's closet, but I would draw the line there. There's no good reason that you should be washing her hair or anything else as the aides can assist her in doing that when she gets in the shower.
You say that she's adjusting well to her new home(though you're not)so let her keep adjusting and get used to you not being around so much.
You may be surprised just how well she really does, and in the end she may not need a sedative after all.
You placed your mother in this facility so she could get the 24/7 care she requires, so let these good folks do their job, and you my dear need to take several steps back and let go of the reigns a bit so that they can.
You are making it harder on yourself than it needs to be.
Now as far as Aricept is concerned, it's pretty much hit or miss when it comes to slowing down any dementia symptoms. And even if it does help at the beginning, it's said to loose its effectiveness after about 6 months. And if your mother has medication sensitivities, it may not be worth the side effects as they may just outweigh any help the medication may provide.
I believe doctors are quick to prescribe it because they really don't have many other choices at this point.
I wish you and your mother well.
I have no experience with Aricept but can tell you that a small dose of Zoloft was a huge help to my dad in his last 10 or so years. He’d experienced so many losses, was lonely, and frequently got sad. Zoloft tremendously lessened this with no side effects apparent to us. He called it his “attitude medicine” as he could tell it helped his attitude. It may be a possibility for your mom
You're trying to control everything about Mom's life, so naturally when you aren't there, she's at sixes and sevens. You're giving her no opportunity to be cared for by others or to assimilate into the community.
As to the meds, anything that controls her behavior is affecting her brain, and since that's where dementia is located, yeah, it's going to have an effect. Whether it will make it worse vs. making it "different" is up for discussion.
You should be focusing on the quality of her life, and if the medication helps that, then so be it. However, if you try to look objectively at the situation and determine you the cause of some of her anxiety, then perhaps a holistic approach would be to back off and see how she does with less interaction with you.
Don't just stop showing up, have a conversation with her so she knows you won't be coming by as much for a while. Quit doing her hair and laundry, too.
Tell her you're going on vacation if need be, and consider doing it for your own mental health.
There is no "answer" to the end of life losses we have. They are constant and there's no upside. I guarantee you: I am 80. We lose things one at a time, and adjustment is a crucible.
My brother when he entered care said "you know, hon, it reminds me of when we were young and everyone was trying communes. They all bickered and complained constantly. Same here. It's like when I was young and in the army. I didn't much like it but I made the best of it".
Like your Mom he was a bit of a loner, happiest in his rooms reading old car books and car magazines, and etc. But he would come out and visit, watch some news in the common room, attend bingo once in a while, take a car tour to the movies, whatever. Did the best he could as he had always done in his life.
Your visiting and being there so much may not be helping your mom. It is worth a try cutting back just a bit.
As to medications, I just don't know. Some are helped. Some are not. For some there is a mellowing of the mood, but a worsening of the balance that can lead to falls. The back and forth of drugs and drug cocktails can become obsessional in itself.
I don't know about your Mom's facility, but at my brother's ALF there was actually a way they could reach out to a psychologist to make visits. They were covered by medicare as I recall or by my brother's friend's supplemental. I do know the visits helped this man adjust just with a bit of talk therapy. He was able to talk about his feelings.
Maybe right after dinner or after she is comfortable in her room call or text. Just to ask how her day was or to say goodnight. It doesn't have to be a long conversation. When she starts to complain tell her she needs to allow herself to adjust that you can do nothing about it. If she keeps going, cut the call short.
The craft thing, if you enjoy it continue it but count that as visitation days for Mom. You can always visit with her before or after the craft. I never spent more than a hr with my Mom. But I lived 5 min away. Some days it was just a pop in to bring her laundry.
I did do Moms laundry. It wasn't that much and the washer and dryer did most of the work. Her bathing, toileting and dressing were the Aides job. With bathing comes hair washing. I did none of these things once Mom was in the AL. Thats why u pay the big bucks.
If she needs an antianxiety medication or an antidepressant, or both, see a geriatrician who knows much more about how these drugs affect the elderly. And many geriatricians are excellent at weaning patients off of meds that may be causing unwanted side effects.
There is a fine line between caring and over caring to the determent of our LO's. You are there 5 days a week, call everyday as well, you are making her totally dependent on you.
Sit back and think this through, are your actions really helping her? Or are you doing this to make yourself feel better?
Sending support your way.
As for her anxiety - I think that's a much bigger stab in the dark, meds like antidepressants can take weeks to titrate up to see whether they are helpful and more weeks to titrate down safely if they are not. Simple anti anxiety meds like lorazepam are known to be fall risks, plus they are highly addictive and were never meant to be taken long term.