This is not a complaint about a nursing home.
I guess this is really just to ask how not to feel guilty if I cannot handle my mother's phone calls with patience and a high level of nurturing. And, I know, this is not a new subject.
It's always the same. She has COPD and is on continuous oxygen, but that is being effectively managed. She is ambulatory; meaning that she can push her own wheelchair as if it is a walker (they have attached an oxygen tank to the wheelchair which she knows how to use even without help), and she can also sit in it and move it around with arms and feet, and she can walk back and forth to her bathroom. She is not bedridden or needing someone to transport her all the time. In fact, if she thinks she is being ignored, she leaves her room without oxygen or wheelchair or a walker and goes to to find the staff! And, she has never had a distress breathing episode from doing that.
She probably rings the call bell between 10 and 25 times a day, and lots of times that's just because she can't remember whether she got her breathing/nebulizer treatment on time, or when the aide said she was coming to make the bed, or help her get dressed or when the laundry or housekeeping will be done. Point is: she is a prolific bell ringer. But, the staff knows all that; they are fine with it. They know her patterns.
However, any time she has any other issue, which is normal to have at age 91, she panics, has anxiety, which makes her breathing worse, which then makes the anxiety worse. And, she rings the call button, but if the nurse doesn't come in 5 seconds, then she calls me. Always the same: "I'm in trouble. Nobody is helping me." And, when I try to ask for details, she gets angry with me. And, then of course, I call the Nurse. I have already been given advice to just not answer the phone every time she calls, and to try to set a fixed time every day to call her, and to trust that the nursing home staff will call me if my mother is in distress. It is a very reputable place. They are not perfect, but I have monitored them as closely as possible and I do trust them. I talk with the nurses regularly, go to plan of care meetings, talk with the in-house psychiatrist, and I know every medication she is taking, and why she is taking it.
It's not that I do not believe my mother. If she says she is in pain, I believe her. It's that there is nothing I can do about it. She has complained about pain under her breasts and across the abdomen, and the nursing home did what tests they could, and then sent her to the hospital about 3 weeks' ago, and she was there for 3 nights so that the hospital could do every test imaginable ---- based on her medical records and the nursing home records and what I told them about her conditions ----and they could not find the source of the abdominal pain. Even worse? It did not help that, as soon as my mother got to the ER, she said she had no pain, and continued to say she had no pain for the 3 days/3nights in the hospital. I had to insist on all of the tests.
Now, she's back in the nursing home, and says she has the same pain. She is 91. I don't think there are any more tests to run. And, I don't know what to do about these "I'm in trouble. Nobody is helping me" phone calls.
Please have her current facility get a geriatric psychiatrist or advanced practice nurse with behavioral credentials in to see her. Their advice will be invaluable.
Yes. She has a high level of generalized anxiety, for years, ever since she started getting "sick".....back maybe 6 years. Probably had anxiety way before that, but I would not have known that. Every doctor and surgeon and nurse has told me that my mother is high anxiety. Problem is: if she takes anything other than a low dosage of any benzo, she will fall. And, right now, the anti depressant started just 10 days ago so we won't know if it works for a while.
At the nursing home, she is seen by a psychiatrist routinely, and she gets Ativan twice a day and just started a low dosage of anti-depressant. I know what the drug is, but not naming it because not really relevant.
I am doing all that I can. It's a catch-22 situation. Could increase the dosage of the anti-anxiety meds, which would help her, but, because she is totally ambulatory, and you cannot restrain someone in a nursing home, and she wants to move around, a higher dosage means she will just end up falling.....because of the effects of the anti-anxiety meds......and, if she breaks a hip, or something like that.....that's a death sentence at age 91, especially with COPD.
But, thanks. Just your questions let me know that I had been asking the right questions of the nursing home medical team.
Has she always done this?
I’m certain that your mother has had all the important diagnostic tests she can have. Do you think she could be looking for attention? She may think she is in the hospital when she’s at the nursing home and therefore there should be something “wrong”, so she’s imagining symptoms. I know it’s easier said than done, but don’t allow yourself to be overcome by worry. In the ER, the doctors and nurses know she wouldn’t be there just because. She’s not the first or the last to claim “there’s nothing wrong with me”. You have done what you could. She’s had the tests and they’ve found nothing wrong. The staff at the NH is well- accustomed to dealing with the fears and concerns of their residents. Call a care conference if you want to make sure you’re all on the same page. It’s your right to call one.
On pain. Once mom had dementia, it seemed very difficult for her to localize pain. I remember once sitting with her, she weeping with pain and frustration. When I asked where it hurt, she opened her mouth and pointed inward. We finally realized that she was telling us her neck hurt.....
What I realized was that my mom had arthritis and compression fractures in her spine, both of which caused her considerable pain on a daily basis, worse if the weather was bad. If the staff asked if she was in pain, she'd say no. Then call us weeping in agony. I had them change her pain meds from PRN to scheduled 2 times a day PLUS PRN. Giving her Tylenol (and eventually tramadol plus tylenol) on a regular basis, rather than AFTER she was already in pain worked. I did not worry that we were "masking symptoms". We were no longer "fixing" anything.
On anxiety. The geri psych put my mom on an extremely low dose of Klonopin (like the smallest dose, cut in half) twice a day. Kept her panic and anxiety in check and never caused her any balance problems. At one point, they were using a pediatric liquid dosage to get it low enough! The idea was, as the geripsych explained it to me, was to get ahead of the anxiety and not let it ramp up, which then needs a higher and more problematic dose to overcome.
And yes, an antidepressant helped too!
On ringing the call bell. If your mom can use the phone, can she be asked to call the desk to ask her question? And only use the bell for bathroom requests?
I think, since you know she is being looked after, making a call to her once a day is probably the best course of action.
My best friend's mom is at home with 24/7 aides. So someone is IN THE ROOM WITH HER all the time. My friend gets, on average, 18 calls from her mom every day, asking for help, saying she's in trouble, saying she's dying, saying that the daughter never comes to visit. It's a phase of this wicked disease. Don't beat yourself up.
My mother has a phone in her room and can call anywhere she wants whenever she wants. She calls her friends and they call her, and she calls me and my sister, etc. I cannot take that away; that would be the emotional ruin of her. She has short-term memory issues but is otherwise alert and she reads 2 books a week and does crossword puzzles and plays scrabble with me, my sister, my nephew (and wins)....so her mind is "there" and taking away the phone would kill her.
I'm wondering if it comes on because of how she is sitting, or something like that, and if getting up and walking around might ease it if you're able to guide her through doing that. If it had miraculously vanished by the time she got to ER, could it have been something as simple as needing to change her position?
The constant calls - how would you feel and what would happen if you [whisper it] turned your phone off?
That is an excellent point. A stitch. Because she pushes that wheelchair with the oxygen tank attached every time she goes to the bathroom, to dining room, to the outside patio and to bingo. They have tried to get her to ask for help, but she is impatient, and the bathroom part...well, if she has to go, she has to go. The Bfs can come fast, if you know what I mean. She does wear Depends and pads, but her incontinence issues resolved for the most part months' ago.....she wears them because she can't always get to bathroom fast enough and understandably she does not want to have an "accident" and then wait to be cleaned and changed.
I cannot turn my phone off. 22 years ago, I did not answer my phone even though it rang 10 times, and when I finally listened to the messages, abut 2 hours later, found out my father had a heart attack, was in ICU, and already in a vegetative state. Nobody could reach me, because I wasn't answering. That was before we had caller ID and cell phones and voicemail, obviously, (only those older "tape" answering machines), but for me, I can't turn off my phone.....although I can just not answer, and check recent calls and voicemail, and know that the Nurse will call if it's an emergency.
You may have hit on an issue that I can try to address with the psychiatrist and the nurse practitioner.
I think that many medication changes they make could be more related to potential liability related to certain medications than related to any improvements in medical condition.
For the Ativan, they keep changing it. She was getting .25 mg, 3 times a day, then it was .50 mg, twice a day, then .50 mg in morning and .25 mg afternoon and night, now it's back to the .50 mg twice a day.
They explained that they change benzo schedules and dosages around because of some kind of protocol related to elderly and benzos. Like a regulatory protocol.
Same issue with Gabapentin (neurontin) for neuropathy. She started with 600 mg, 3 times a day. They lowered it to 400 mg, 3 times a day, but not because she was getting better. Her leg pain and tingling is not better. She does get Tylenol, PRN.
Same with Doxepin, which she has taken to help sleep, for over 30 years! She took 30 mg at bedtime when she lived at home. As soon as she went to nursing home, October 2017, they lowered it to 10 mg or 20 mg.
I am going to ask again about the Ativan and the Gabapentin changes. The doxepin is fine because she says she is sleeping through the night, and the higher dosage was from before she was taking Ativan and gabapentin.
If her breathing is causing her anxiety have you tried getting her an oximeter? My mom had CHF and when she felt breathless it helped her anxiety to check her O2. If it was a little low she would try to increase it by deep breathing. It was a distraction of sorts. But it did reassure her that she was getting plenty of oxygen. ( it was usually 97-99). Your mom being on oxygen may not be as impressed with the meter. It helped my mom.
I have been told, for over 3 years' now, by everyone who has treated her in the hospital and in regular doctor's offices and now the nursing home, that it's anxiety, which exacerbates her SOB, which then exacerbates her her anxiety. Cycle.
You mention about reading reports, talking to staff and people, and going to meetings, but do you go in and check on her yourself sporadically unannounced? With no offense meant to the facility, that is the best way to ensure the staff takes good care of your mother. Saying one thing and doing is another. Sounds like you have a little issue with confronting your mother. You talk to others around but not directly to the source to deal with it.
If all is good, well then, talk to your mother when she’s in a good mood about the extra calling, and explain the worry and upset she causes when she does and ask her to try to refrain from doing that. Make an agreement of some sort.
You know, I’m talking mechanics here. You were asking about feelings.
This is something you have to resolve with inside yourself. When you know you’re doing all that you can and others are cooperating and doing their best, then all you can do is have a frank talk with her, and then stick to your guns and know that you’re loving her. this is a personal resolve issue. You have to tell yourself when you’re being a good child, when your mother, who is now the child, doesn’t get what she wants. I don’t know if you’re a parent yourself, but parents know that there’s times when they do not give their children what they want even if they would like to. And we get through it because we know we’re doing the right thing. And that’s the best we can do. We also share our stories with other parents who understand, laugh, cry and empathize with us and to get advice. We do this to reassure ourselves we are doing the best we can. Just like you’re doing now!
Hang in there. Hugs!!
Yes, I do change the days when I go, for the exact reasons you suggested. I talk to my mother every day, and my sister does as well. Each of visits once a week. We found a trained volunteer "companion" from a religious family services foundation who now goes once a week, for 2 hours, and plays scrabble with my mother and wheels her all around the grounds and they sit outside. It is a huge facility, so she can be taken over to another building where they have a large library and tons of beautiful art on the walls. Also, if these people have the time, once in a while I bring one of her friends with me and we bring lunch, and also once in a while a long-time friend of mine who thinks of my mother as kind of her mother. Also, if my mother complains that her long distance friends don't call, then I get in touch with them, because I have known them my entire life, and then they either tell me that they just spoke to her or they will call her. And, my mother has a niece who visits about once every 6-8 weeks; she lives too far away, another state, to visit more.
My mother is given acid reflux meds every day. It is true that she will not continue to sit up straight after eating, but she has been advised about that and we gave up; she just won't do it. And, she has an electronic recliner/lift chair in her room, so she can recline it on her own. And, they also tell her to keep her legs elevated.....so sit up straight....elevate legs? Cannot do both, not with that chair. Cannot get a separate chair with ottoman because she will trip over the ottoman.
Anyway, all good suggestions. And, I am trying.
Every attending physician in a hospital, every surgeon, every one of her doctors, every nurse, and everyone who has been a caregiver, has said the same thing: my mother is an extremely high anxiety person.
I am not a parent, never been married, never had a pet. So......not a lot of nurturing experience. And, obviously not used to taking care of anyone else. But, yes, I do try.
Re the chair - ask home to replace her recliner with a double motor one so that she can elevate legs without being reclined, don't know if you would have to provide this privately (in UK about £500) but worth it in the long run. Where exactly is your mother in pain? You say she has gabepentin, ativan, doxepin something for reflux, is this her entire drug regimen?
She doesn't like the nursing home. Understandable. She's 91. It's not home. Not her way & timing of doing things, she thinks or feels.
She needs attention. Understandable. Good idea telling her you will call her instead. When she tells you all these things, just tell her that you remembered this and you are working on that. At times ask her what she wants you to do. Acknowledge her in everything. Lots of loving on her...in your words and physically.
Blessings
She too called and complained and was not easy to care for in the hospital, so I was told. However, she fell once in the bathroom because she was left alone. Her bed was made and whoever did it did not put her call light back up by her. So she had to blast her tv to get help. In that time her hair was only washed one time. She came home with the tips of her toes black from the sheet being pulled so tight on the bed it rubbed the skin off her toes. She appeared to have discoloration in the area of the diaper from it rubbing on her. Took well over a month for the discoloration to go away and took over two months for her toes to heal. Thankfully we have a visiting nurse, a foot doctor who comes and sees her once a month, an r.n. who visits her once every 4 weeks, and if necessary, a P.A. also. I am her middle child of 6 children and she lives with me and my husband in a very tiny California bungalow type home. We care for her and it is without a doubt a lot of work. But in all good conscience, I cannot allow my mother who took very good care of us, to be in a place where she gets half-ass care. And this place was rated 5 stars, the highest, by medicare. So when she spoke, I listened. I complained to the director and to the staff nurse, who told me they were never told of her falling or anything. So good bye to them. She would never leave any of her children to be cared for by people or in a facility such as she was in, and I wouldn't leave her there either. As I said it is hard to care for her. She can be very difficult to say the least, but I'm doing it thankfully with the help of my husband, my youngest brother, and my youngest daughter. If you think there is something wrong with your mother mentally request she get a psychological analysis by a psychiatrist and where is her doctor? What does he say? Do they have activities in the nursing home with the other patients? Ask questions and demand answers.
The symptoms you described sound simular to my mom's latest symptoms. Pain in her breast/chest and abdomen. We thought it was gas, but it turned out to be congestive heart failure. The pain was caused by a fluid overload pressing against her heart and lungs. However, it took several trips to the hospital before the doctors were able to determine this diagnosis.
You removed numbers from phone. I wonder if she could ask the NH to only allow her to have her phone for a limited amount of time.
Personally I do think her anxiety is what is at the back of why she calls you. No one responds to her bell fast enough so her next thought is to call you. Hopefully her antidepressant will help with her anxiety and I know you have to wait weeks for it to take effect. My dad is on Buspirone which is not as big of a risk as a benzo is. Plus benzo's are linked to dementia. But you are looking at a classic anxiety issue. I would let her call go to VM or even just block it during specific times of the day. She will be fine. We need to stop being helicopter children. If there is a real issue or emergency, they will call you. But if you let this continue...eventually it will cause you issues.
Good luck and God bless you really.💕😇