I have always felt that my parents had way too many doctor appointments due to their excellent insurance beyond Medicare, and we have recently been asked by the facility to let them do more of the doctoring. I realize that it is generally a two to three hour visit with transportation, waiting, the consultation, and then waiting for the transport back. This is hard on everyone, including the patient. The facility has a doctor who comes once a week, a physicians assistant who comes every day, in addition to all the nurses. I agree with allowing them to take care of general illnesses, but what about my mother’s psychiatrist who has treated her for decades for bipolar disorder? Or her oncologist who sees her twice a year for aftercare of breast cancer from 10 years ago? The ophthalmologist who treats them both for glaucoma? They have not been there very long, so this is all new to us, and we took care of them for so long. I would love to hear from some of you with more experience in this as we have a care meeting coming up pretty soon.
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I am sorry for your loss, and I thank you for taking the time during your recent bereavement to offer help. Rest assured that I will take your words to heart. At 97, your mother was in much better shape than my mother ten years younger. We children are happy and available to meet the transport and be with my parents during the visits, but we have to take into account how exhausting and disruptive they are for my mother. My father is stronger, and like your mother, sees it like an outing.
My prayers are with you at the end of the journey with your mother.
I too wondered sometimes whether it was worth it? It took over my life sometimes (most often?) but there were medical situations that the nursing home would not have recognized – or, frankly, cared about – that I noticed and addressed. The emphasis in a nursing home is general geriatric care, and I think that emphasis is different than someone who truly, individually cares. I’ve been told by more than one doc that Mom would have died several times – and much earlier – if I hadn’t “advocated” for her, and to me that meant taking her to appointments, visiting nearly every day, and really knowing what was going on. You just won’t get anywhere near that level of care or control, with nursing home staff. If you have POA, ask what meds they have her on, etc. They will know you are involved, vigilant, and usually pay more attention.
I couldn’t even get them to stop giving her laxatives without her knowledge if her system didn’t exactly follow the “bowel protocol”. She would be totally embarrassed and distraught when without warning she got explosive diarrhea at the dining room, or even in her room. (She was totally continent, but that didn’t always mean, either, that they were quick enough to respond to the call button, but this was a different issue!) Every time this happened, I went to the meds nurse and asked whether they’d given her a laxative, and every time they had, I repeatedly told them to let her know, to warn her, to start off with a smaller dose, etc., try prune juice! Before she ended up in the nursing home, she’d had issues with chronic diarrhea which after extensive testing was finally identified as a reaction to the anti-acid she was on (Prilosec). This is not uncommon! I know now that I should have demanded this instruction be placed on her MARS (record of what they were supposed to follow in her care), because then they had to pay attention.
She had hearing problems, which just seemed to get worse and worse. I looked in her ears and could clearly see they were plugged by a large amount of wax… I told the nursing staff, and nothing was done… Eventually, I carefully pulled it out with blunt tweezers… She had a very painful corn on top of her left little toe, and that went untreated because most of them (young) didn’t even know what a corn was, or how exquisitely painful it could be. I took her to a podiatrist…
This was all in a generally respected and “good” nursing facility. They just have too many people to take care of, and care staff (CNA’s) change frequently and just aren’t educated (and in some cases, caring) enough to pay attention. I was probably listed in her records as a capital “B”, but that’s too bad. (They didn’t like it either when sometimes I “advocated” for other residents who didn’t have anyone at all coming in to visit or check on them.) “Minor things” - A roommate of hers never wore her dentures except for meals because they were so ill-fitting. Even with Medicaid, there is a level of care expected and covered… Another resident (a very large woman who was in a wheelchair and I became friends with, complained that her fanny hurt. I bugged staff until they finally rolled her over enough to see the bedsore that went all the way to the bone.. She spent 2 weeks in the hospital from that.)
Eye care? Cancer followup? Bi-polar? Really? Not even close with a general nursing home doc… Just with the Bi-polar disorder, my guess is that she would end up generally sedated because she was “acting out”. I know – I REALLY know – how hard it can be and how much of your time it can take to personally provide the individual care and attention. I’m by myself with no siblings or kids, so it was “only me”. Don’t be afraid, either, to follow your own instincts because you know your parents far more than any facility staff will. I will be forever grateful I was there and able to give Mom that care, and I always knew that unfortunately it wouldn’t be forever… (BTW, I was taking Mom to outside physical therapy and occupational therapy every week… I’m not even sure who I finally bugged enough to get that approved! She was doing really well – amazed everyone – and could even get up from a wheelchair and walk a pretty good distance with a wheeled walker. It was also a chance to get some quality time in away from a facility setting, and to stop afterwards to have lunch or a treat.)
November 13, a CNA was giving her a shower and transferring her from the wheelchair to the shower chair. Mom slipped on the floor – told the CNA her foot was slipping, but the girl couldn’t stop her fall. Mom broke her tibia and fibula in her lower left leg. No one realized she’d actually sustained that break for a good part of the day; she was painful but it was thought to be a sprain. Toward evening it got much more painful, was swelling, and badly bruised. She was taken by ambulance to ER, where her injury was diagnosed. They put a splint on her leg and sent her back to the nursing facility. The nursing staff just couldn’t take proper care of someone this badly hurt. They couldn’t (weren’t allowed) to give her the levels of pain meds required, and over the next several days she declined until she wouldn’t eat, wouldn’t move, and in fact didn’t even recognize me. She just moaned and said she hurt… The fifth day she starting screaming and finally went back to ER. She was admitted to the hospital – still screaming – and for two more days she was in horrible pain. The hospital wouldn’t administer the levels of pain control (opiates!) she needed, because they were afraid it would kill her… Seriously?! Her kidneys were damaged, they thought she’d had a mild heart attack and probably had a clot in her lungs – her electrolytes were totally screwed up. I was totally distraught, and finally the staff hospitalist doctor talked to me and asked me what my goals were? I said I wanted her out of pain, comfortable, and if that took her, so be it… I told him if there was any potential for a life with meaning and quality at that point I would fight with teeth, claws, and my last breath for her, but this was just a fight “we” couldn’t win this time. He agreed with me 100% and she went on hospice (staying in the hospital, although they asked whether I wanted her to go back to the facility). All “support” was removed, and it took three days for her to pass. I am still raw and “up and down” with my emotions, but I can at least console myself with the knowledge that I did everything I could for her, and the fight had to end at some point. Her life had value and as much quality as I could ensure, and that helps cushion her loss…
I’m sorry this “answer” got so long! Your question just resonated with me so much, and brought back so many memories, and most people here probably won’t get beyond the first paragraph or so… Mom was 97 years old, and would have been 98 in two months, February 8 of this month…
I think we are going to feel more comfortable with letting the facility determine the necessity of all those requested specialist visits. I agree with the need to keep her psychiatrist. The doctor or nurse practitioner there is not qualified to treat my mother’s bipolar disorder. Any one of you aquatinted with this know proper treatment means the difference between functioning normally and utter hell. I was surprised to learn that it may not be necessary to see her oncologist after so many years of being in remission. I will look into this.
I do want to address one of the misconceptions someone posted about that residents in a NH don’t need curative medicine. It is true that a NH is the end of the line residence. My parents were never in an Assisted Living facility because, we, their children, Assisted them to live in their home for over 15 years. When it became too hard for us to do this, their ADL’s (adult daily living skills?) were so poor that they wouldn’t qualify for AL and had to go to the NH. Nevertheless, the residents in a Nursing Home need more professional care, both medically and physically, but many will live for many years in this end stage residence. Yes, there are those there who never leave their beds, but the cafeteria is also full of residents who can feed themselves, and then make their way back to their room or to some activity. I’m sure there are Hospice patients there, but the majority are not, and those residents will continue to get curative or preventive medical attention the same as anyone else outside the facility.
Again, thank you to everyone who answered. I am going to share your answers with my siblings. Your help is so appreciated and such a blessing. God bless all of you.
The NH's doctor was Moms primary stand in at the Hospital so I went with him because he had seen Mom. I allowed their eye doctor and dentist to see Mom but Mom had no problems in this area. I did drop her Thyroid doctor because the NH doctor agreed to run Moms blood work every few months and contact her Thyroid doctor with any problems. Her stomach Dr I dropped because he was called in after a hospital stay. I had got him down to a year visit before that. She was not having any problems.
This is great stuff for us. My mom’s toenails and hair were getting to be scary movie grade.
Treatment given by the facility doctor I will and I can take her to someone else and pay the out of pocket cost ($60). You should be able to keep her specialist. Good luck!
Even though she is immobile I still take mom out to her own internist of 25 years but it is difficult for her memory care facility to get orders sometimes especially if she falls ill on a weekend . I also take her out to her own dentist since oral care is non existent in facilities
When sepsis landed her in the hospital and then in a nursing home for a brief one month stay, we were stuck with the house Doctor whom I never saw and the nurses had trouble getting hold of to even remove an iv in order to get her back to her memory care facility
The other downside is paying for transport now that I can't put her in my car - $25 for the facility van but it was $140 to get her from the hospital back to her facility after the flu over the holidays
I finally figured out that doctors keep patients coming back whether they really need to or not. I believe it's for the almighty dollar and to prevent liability issues. I also think they order tests well beyond the time they're of any use. I drove a 92-year old woman to her oncologist's office and as she left, they scheduled her for her "annual mammogram" for a year's time out. Why is a 92-year old woman getting a mammogram? Ridiculous waste of money. That's well beyond the age any medical body recommends getting mammograms.
I saw it with my mom. She had ongoing heart issues that were stable. But her doctor made me bring her back every year to test her, even though her a-fib wasn't going to get any better, only worse and we all knew that. But I had to take her in order to get her prescriptions refilled after a year, even though she was stable and not showing any issues. When she was 96, he wanted to do an echocardiogram and then a chest x-ray. She was beyond ready to go but after arguing with him twice about it, I caved. Totally useless in my opinion. But I was strong-armed by the medical system to do it.
I think it's a blessing to seniors in nursing homes if they just see one doctor except for maybe eye care. When you get to a nursing home, the reality is you're not getting any better. Your care should be geared towards comfort, not cure.
All the doc appointments had been a huge hassle, Dads scary driving, having to sit for hours in waiting rooms only to be told YOURE GOOD, SEE YOU NEXT MONTH.....And this usually by an assistant.
When they went into care I immediately signed them up for the in house doc service. The place has a doc, nurse practitioner, LPNs, RNs and can take care of all their needs. Does mom really have to get loaded up and driven to her cardiologist, her urologist etc? No...Staff can assess her meds and adjust if needed.
It has been a huge burden lifted for me and my folks.