Thanks so much esobay. And for saying at some point it was better you didn’t know. Believe me that has occurred to me!!! I think that 25 years of caring for a kid with health issues has made me forget that in the 90’s, with DNR, I could relax a little. Things that are palliative may not shorten life either. But I am afraid of falls with those meds and so is her PCP.
To be honest I was upset that when I tried to give a helpful observation (morphine still affecting my mother 3 hours after oral solution dose) the hospice nurse 1) doubted my observations, saying the half life was short and she shouldn’t be still suffering effects and 2) then said “Are you sure you didn’t give her something else, like oxycodone?” which was another way of denying my observations. And if I was concerned that she was woozy and unstable on one med, why would I give another?
This nurse is not a good fit for my mother- I wrote about that before- and now maybe isn’t a good fit for me!!! I loved the visiting nurse we had, and we all worked together really well, so I am not used to this.
Anyway, how do you all handle medical/nursing visits for a parent/loved one with dementia? I mean, clearly my mother is not a reliable historian! And several of the players don’t know her, her reaction to pain (moaning loudly for minor pain and ignoring certain severe ones!) etc. so it seems as if it could be helpful to communicate. I would love to step back a bit and have taken a break lately in the mornings thanks to the aide, but the medical stuff is still being coordinated by me with docs while the hospice nurse comes unexpectedly. I always keep the AL informed about doc’s orders and suggestions but have no way to do so with hospice.
Anyway…the colon issue is not terminal and is better, and dementia continues but might be addressed by a memory unit. Time for me to do the tour and check prices.
Hospice IS a nice way to get a private aide covered by Medicare.
I have an idea the AL WANTS hospice because it saves them trouble. They love it when I sleep on the couch. Otherwise they might kick her out I suppose.
Have a good rest of the weekend and esobay thanks for answering.
@compmom, you can only do so much, you do the best you can and you figure she is as safe as possible with professional care. Of course, the professional care still means errors and issues, often due to wrong assumptions. When we put FIL on hospice, time after time they kept talking about his stroke and ascribing all his issues to his serious stroke. In reality, he had had Bells Palsy and half his face sagged for decades, that was not an indicator of stroke, but he had had a few small strokes with no noticeable after-effects other than some minor weakness. Blaming everything on the stroke was inaccurate and not helpful for new issues.
Do what you can to get a new hospice nurse assigned, but then also, give yourself a break. It took me a few years to get over the exhaustion hangover from the in laws last 18 months. There is only so much you can do.
I am super conscious of giving myself breaks and make sure to go to Tai Chi, art, and see friends.I am fortunate in being able to drive away to come home to my apartment.
I do care about errors that cause fall risks. That, for me, is a bottom line and the doctor speaks strongly on this. Use of strong pain meds and tranquilizers should be avoided unless she is in severe pain.
And good communication reduces my work load, it doesn’t increase it. That is my other issue for the meeting.
Care for my mother is much less exhausting than dealing with the layers created by having AL and hospice involved, for me- but they do help my mother so I am going to do my best to negotiate the complexity involved.
I am wondering if a dentist who specializes in working with autistic children might be suitable for adults with dementia? I understand that the anesthesia/sedation issues would be different, but the basic persona and skills of a medical practitioner who chooses to work with a “difficult” population might be adaptable. This would be if there was an issue because I agree with the basic discussion here about letting it slide if the elder (thanks for the new expression @HImom) is too troubled by the process.
My mom saw her (our) regular hygienist and dentist not long before she passed away. They were so gentle with her and honored her visit. Mom was very proud of her teeth and it was awful that she wasn’t able to take care of them like she had once she moved into the adult family home.
I think it helped that there was a long-term relationship with the office, also that they have a number of patients in their later years.
I don’t know if I would risk a visit to an unknown if there were significant anxiety or agitation issues, unless there were obvious signs of pain or near-term tooth loss.
My FIL apparently can’t deal with toothpaste anymore. He says he’s using mouthwash to brush, but it’s truly anyone’s guess. As long as he’s not putting brylcream on the brush, we’re good.
So an interesting new development with my dad. He has been in Memory Care for two and a half years. Earlier this year he got pneumonia and afterward the doctor ordered physical therapy because he had lost a lot of his mobility. He really enjoyed the physical therapy so when the Medicare visits ran out we started paying the PT to visit twice a week. After a while she started taking him to the gym, which is in the senior/assisted living section of the facility. He LOVES it. To the point that that is all he thinks about. The staff that work with him in Memory Care take him to the gym when they can. I went to visit Saturday and he was at the door wanting to go to the gym. My sister brought him to my house for Christmas. He suggested they go to the gym rather than Christmas. We had a nice visit, but when my husband brought him back, he refused to go to his area, he insisted he take him to the gym. His previous obsessions were coffee, moving, and Sees Candy, so maybe this too will pass.
Interesting holiday with my folks. Dad’s memory issues from his brain injury seem to be stable, but he seems to be more aware that something is “off” and it is making him anxious. He is constantly (and I mean, CONSTANTLY) asking what is happening next? Where am I supposed to be? etc. I feel bad for him.
Mom has been displaying a little memory loss herself but yesterday I sat with her for a half hour to help her write out cards and checks for my kids’ presents. She was so puzzled because she wanted to give my S a check for his December birthday and a separate one for Xmas (okay that makes sense) but couldn’t figure out why my D only would get one check (her bday is not in December so she was only supposed to get an Xmas gift). Then she asked me three times, “did I give the kids their cards and gifts?” It was a little unsettling.
Plus mom is just unable to deal with dad’s memory loss and attendant anxiety. I am thinking of asking the doctor if some sort of med would help her deal with it or at least mask it for her. She is so unhappy - most of us would be able to listen to the geriatric therapist and try to go along with her suggestions about living with a person with limits but mom just cannot wrap her head around that.
Does anyone have any experience with or suggestions for the following situation? My ex-husband is his parents’ full-time caregiver. Both are 92 years old. His dad has many health problems. Late last week and early this week, his dad was having symptoms that, according to the health-care providers my ex consulted, were serious enough that dad should have gone to the emergency room. Dad refused because dad thinks he will die in the hospital and he doesn’t want to die. Ex was very frustrated but he did abide by his father’s refusal to go to the hospital. However, this means that the health problem (which could lead to his death) is not being appropriately dealt with.
@rosered55 Lots of experience with this. What is the health problem? Does your ex’s dad have any memory issues or no? If not the ex could explain that he is allowed to check out of the hospital if he is indeed going to die and die at home. Now he doesn’t want to die, so next time maybe your ex could explain that this is a doctor’s appt at the hospital to see if he needs to be admitted or not. The ER will tell you if not serious enough to be admitted. If he blew off the ER and his symptoms are bad then he needs to go to the regular doctor and talk this through. If he has memory issues at all your ex should make the best decision at the time and not worry about it. His dad will likely forget and if he doesn’t you can check him out after he’s had x treatment or y exam or z test and your ex will have more info then they have now. So hard his dad but on the caregiver as well
@surfcity When I took a loved one in for anxiety and memory issues I was told it was like a 2 way street. They could treat the cognitive or the quality or life but not both at the same time well. One should be the focus. I think the caregiving is most difficult on the older adults caring for their spouse or sibling as they are going through similar struggles and age factors. Your mom may need help with the stress of your dad and her own decline in some ways. It may be making her sad or feel overwhelmed. A low dose of an anti-anxiety med might help. The tough part is trying and seeing on each medication to find the perfect fit pill wise to the situation. Hang in here
@surfcity, my dad coped a lot better with my stepmother when he started taking an SSRI. It seemed to calm him down enough to get through to him that it was better to indulge my stepmother’s quirks, e.g., needed to have her pocketbook with her all the time, than to try to convince her that there was no reason to want her pocketbook. She took an SSRI too.
THIS IS EXACTLY the situation. I wish I could get mom to just “live in dad’s world” and ignore the fact that he puts his pajamas on at 10 am or hoards crackers from the cafe (I return them every other day) but she continues to try to “convince him” that he should not do these things and hence, makes her life (and his) so much more difficult.
She is already on a dose of Zoloft. Perhaps I should ask the doctor if it can be increased or if there is another med that would be better??
Regarding psych meds for seniors, I have a word of caution as a mental health professional who has seen seniors be incorrectly medicated. Medication can be extremely helpful, but it should only be given by physicians/psychiatrists who specialize in geriatric medicine. As people age, they don’t metabolize medications as quickly, so a situation can be created where a “standard” dose for a younger person is actually an overdose for a senior. And meds like SSRIs have a window of effectiveness, where too high a dose can look like not enough.
So while I 100% agree that antidepressants like SSRIs and other meds can be very helpful, make sure the doctor has experience in treating seniors. Sometimes a psychiatrist who specializes in geriatrics can “target” the medication much more accurately than a general practitioner.
@oldmom4896 sorry if it sounded like I was aiming my comment at you. I really wasn’t. I’ve just seen so many instances of bad prescribing that it made me want to say something!
@tx5athome What a delightful story! Amazing he remembers the gym from day to day.
@rosered55 has anyone discussed with FIL goals of care? Is his goal to die at home? Or is his goal to avoid death? The goal of dying at home is perfectly reasonable and palliative care could provide an extra layer of support for your ex.
Avoiding death is of course ultimately not possible; having values clarification discussions such as at what point would he not want to be kept alive, or be allowed to die a natural death, seems reasonable. For example, my mom told me years ago she would not want to be kept alive if she was in long-term care. Therefore, I would not take her to the ER unless she was in pain or distress and she has a MOST form stating this. I would not allow medical intervention for a life-threatening illness. Ditto for my dad who said he would not want to be kept alive if he didn’t recognize his loved ones. I want to follow their wishes the best way I can. Having these values clarification conversations with my parents before severe cognitive decline have proven to be invaluable guidelines as a health care proxy.
@calla1 you are correct about psych medications. Lorazepam was a disaster for my dad but works well for others so it is often individualized. A geriatric psychiatrist has proven to be invaluable. But they are difficult to find.
@calla1 I agree about who should Rx for seniors. The zoloft was first Rx by a geriatric psychiatrist at their old CCRC. I believe the new one has a visiting psychiatric NP so I may be giving her a call.