My dad’s incision from his heart surgery in APRIL is still seeping. He’s been going to a wound specialist but it hasn’t gotten better. They finally decided to put him under and open him up to clean out everything. The good news is that although there’s infection, it hasn’t gotten into his bones.
My sister and I are not impressed with his PCP, because he hasn’t been responsive AT ALL. Sis found a highly-rated doctor who has a concierge practice, but Dad doesn’t want to change. Boy, it’s easier to deal with kids than parents, isn’t it?? If this was my kid, I could just make the change.
Oh, amen that last part. My mother’s 89 and I was talking to someone whose mother is 88 – we joked that it was sometimes like having toddlers but with agency.
@MaineLonghorn not sure it is easier with kids. I find I am dealing with the same issues with both. I have to at least act like I am honoring autonomy in the case of a parent with dementia and a young adult who is dysfunctional due to bp1.
Do you have an invoked proxy yet? I got that done by an MD and make the decisions, but have to still give my mother a sense of control. I forget if your dad is competent.
Anyway, yesterday I found bags and purses all over my mother’s apartment. She had spent all day looking for her car keys. She does not have a car.
Then she fell in the pub. End of quiet period of light duty! I think we all have to get used to the ebb and flow, and the unpredictability is what I find hardest.
As for holiday meals, we may go to a restaurant. My daughters and I have done that for years, since I sold my house. I’ll sit with my mother at assisted living and pretend to eat, then go out with my daughter if she is available. Otherwise, I’m fine with just going to the assisted living. We keep things low key because life tends to be, well, high key
@compmom, good point. I am just fortunate that my disabled son is happy to let me make decisions for him. Of course, I always keep him fully informed and make sure it’s OK what I do.
Dad is fully competent - sharp as a tack. I have seen zero signs of forgetfulness or dementia (unlike my mom). He’s just stubborn! He’s used to being in charge of research, students, university departments, etc.
@MaineLonghorn I hate to say this but dementia sometimes has a silver lining. I mean, someone told me that things would get easier for me, anyway, as the dementia got worse, and that has turned out to be true. Tough to deal with an elderly parent who is sharp, stubborn, and likes to be in control. You end up in the position of a middle manager- all the responsibility and none of the authority!
I have a question about what assisted living facilities expect from families.
I am responsible for my mother’s colostomy. The aides will change the bag but I change the wafer/barrier underneath, every 3 days, provide the supplies, and train staff. That’s fine. Otherwise it would be a nursing home.
She just fell again and has a large wound on her arm. Every time she falls there is a wound. She is on Coumadin and so it also looks like a scene from CSI.
Anyway, they tell me I am responsible for wound care. Sometimes this requires a daily visit. Last night it was kind of scary. I changed the bandage but there was a lot of blood and the person who initially bandaged the wound had put tape directly on her wound/skin.
I actually did request the nurse, an agency per diem, who helped me pour sterile water on the wound while I gently dislodged the old bandage. After that I was on my own. I put a large bandage on it, wrapped it in gauze, then taped, to avoid any tape on the wound.
Many residents don’t have relatives around. So how can they require wound care by family for their wounds? Is the AL taking advantage of me? State regs say assisted living cannot do “complex wound care.” I would assume they don’t want to be liable for infections. But what constitutes “complex”?
Some are sent to the hospital and then have a visiting nurse. My mother’s wound is a skin tear, not deep like some previous ones. I don’t think it would qualify for a visiting nurse. When we did have a visiting nurse for a wound, the purpose was for the nurse to train me, not do it herself.
Just wondering if any of you face these demands by AL and how you handle it. I see my mother frequently and can do this, but for $8k+ I continue to wonder what the heck we are paying for. The marketing about a 24 hour nurse is pretty darn annoying in this context!
We have had to private hire when my mom has needed extra care that wasn’t covered by Medicare.
The nursing staff at her facility can give meds and help with ADLs. Anything above that is on us.
That said, we had a wound nurse covered by Medicare when my mom fell last summer and needed daily wound care. They also sent a nurse to remove her staples so we didn’t need to go back out to the hospital.
Is there a social worker at the facility you can talk to? Seems to me that there should be Medicare home visit resources to access if there is a skilled need.
Please talk to the social worker. It seems like for what you are paying this might not be the place for mom. If she is continuing to fall, on Coumadin, cutting her skin regardless of how small it is, one cut that actually leads to an infection can be disastrous. Has she been checked for bedsores etc also?
Maybe someplace with moderate nursing care would be better? I don’t know but is there an in-between place to check out.
As far as people without family then they are most likely on nursing care. In any of these places it’s good to show up and let them know your around. They will look after her better if they know their being watched per se. It sounds horrible but it’s been our experience with several different situations like this.
My dad is in Memory Care. When he needs wound care, the doctor orders a home health nurse to come by. Between his Medicare and Medicare supplement, we don’t pay for it.
I am there almost every day. Yesterday I talked with the director of nursing, who for the first time in 4 years promised to contact the MD for a visiting nurse. If the wound is assessed as “ complex” the visiting nurse will do it. If it is not complex, she says the AL will do it. This is after 4 years of being told I have to do wound care ( and provide supplies). Yesterday they didn’t give me bandages so I went to CVS and bought bandages, gauze and tape big enough for this wound. I have a container full of supplies that do not fit. I am skeptical: in the past the visiting nurse trained me and only came once a week. But AL still wouldn’t do it. There is no social worker at the AL. Can’t even imagine that! It is true that my mother would be in a nursing home without my very frequent involvement- the AL tells me that all the time. But I don’t want to be taken advantage of and we pay enough so they can at least do this small piece of the medical coordination that they advertise. Most shocking to me: for two days in a row no one pulled up her sleeve to observe the excessive bleeding going on. I had to tell them. She hasn’t had a shower in 4 days and I asked them to cover her arm with plastic but will most likely have to bring plastic and do it myself this morning. Since the colostomy I have been happier with the AL and have more interaction with the wonderful aides so not knocking what they do. Just trying to establish some boundaries for myself by urging the administration to take on a little more. I have been so afraid of them kicking her out that I often do too much! I shouldn’t type on my phone. I can’t figure out how to do paragraphs!!!
Visiting nurse is coming 3 times/week and agreed that the AL has been taking advantage of me PT and OT as well… so grateful for help.
I spent all day yesterday trying to reverse an order from the nurse practitioner who wrote “No tape or adhesive bandages.” The nurse practitioner did a wrapped gauze dressing and it came off twice, so I used a large adhesive bandage, which stayed on. Skin is thin and cannot tolerate a lot of tape but bandaids are fine.
Now the assisted living cannot even put a band aid on for a cut. My mother had two more cuts on her legs and there were no bandaids applied by the AL due to that order!!! There was blood on her chair.
The nurse practitioner sent a message to me that she refuses to rescind that order. Argh.
Called the visiting nurse to talk to them and she didn’t succeed either.
Thanks @mominva but the visiting nurse and I are using large adhesive bandages with a wrap with gauze that sticks to itself. The problem is that the AL won’t use them due to the stupid order. I have all kinds of cool supplies that invove some adhesive.
The wound is at the elbow and any dressing, even the one you describe, moves too much without the adhesive bandage. In fact, the one you describe is exactly what the MD office did -twice- during the appointment and it came off both times.
Net result is if she cuts herself, the AL won’t put a bandaid on. If she takes the bandaging off (dementia), they will have to call me to come from 20 miles away (or the nurse, depending- I got that settled). And if she impulsively goes into the shower, which she will, it will have to be redressed with same result, call to me to come quickly.
I don’t know if I am getting the stupidity of this order across. My efforts yesterday were out of Dickens and could be a good Saturday Night Live skit similar to the one I saw about navigating automatic phone systems.
I have been doing wound and colostomy care for some time. In fact the colostomy requires a huge adhesive wafer. This is just absurd. It won’t get resolved until Monday. In the meantime hoping for a bandaid outlaw on staff!
@compmom, many hugs, this is so hard. Even harder when your help isn’t HELPING!
I would definitely be looking for a new place for Mom, the AL places can vary widely in levels of help offered. When we invoked hospice (Mom was on it for about 18 months) their nurse had a lot of issues with Mom’s helpers.
My friend’s niece just moved her pretty far away to a cheaper area. Not that the care is so much cheaper, but there is more staff and more staff stability where the cost of living isn’t so much. My friend is pretty far gone, doesn’t usually speak so it isn’t like she knows how long it is between visits.
My sister and I feel like we’re in an SNL skit, too! But it’s certainly not funny.
My dad had a procedure to clean out his incision wound on Friday. It went OK, although they didn’t order a CT scan as the advocate requested. She was concerned the infection had gone to the bone. His heart doctor said, “It hasn’t gone to his bone.”
Yesterday, he had plastic surgery to close up the wound. The doctor couldn’t finish the procedure, though, because he found another pocket of pus near Dad’s lungs.
After the surgery, they finally took my dad for a CT scan.
The infection has gone to his bone. It’s fricking unbelievable. Right now, he’s having fluid drained from his lungs. It’s just one thing after another. My sister is so frustrated that nobody listens to her OR the advocate. We want Dad to change PCPs, because he’s been useless, but Dad refuses. “My old doctor recommended him and I know he’s good.” Uh, not so much…
We really feel like we should sue someone, but whom? It’s been a you-know-what all the way around.
On top of all of this, Mom and Dad have to decide by MONDAY whether to take a unit in the independent living facility. It’s not a good time to make a decision on something so incredibly expensive. They’ve already turned down one unit. This is a good one, and if they turn it down the next one probably won’t be as good.
OK, rant over. I have to go put the turkey in the oven!
@Mainelonghorn so sorry. Wish I could say I am shocked. I hope you had some respite over the turkey today. And that the big decision on the purchase goes well.
Not rescinding the order seems odd when you know what your mom’s response to adhesives.
Wow @MaineLonghorn But I would not put too much blame on primary care as all he can do is refer back to surgery. Even getting a CT may not be possible without the surgeon’s suspicion for bone infection due to insurance pre-authorization requirements. I’m sorry even the advocate isn’t getting anywhere.
As to the IL decision, isn’t this a place your parents vetted and decided upon before so many medical issues? Can your parents afford to take the offer and negotiate a move in time several months from now? If they decided this is the place they want to be, and the unit they want is available, this latest crisis should not change the situation, and in fact, make it more urgent your parents be in a situation in which medical care and services are easily accessed.
I just made a deposit at a memory care facility and gave notice at the AL. If I am getting this upset about bandaids… The truth is my mother cannot follow instructions because she cannot remember them and even if she did remember, she is willful and stubborn. I am tired of being the one who tells her what to do. The dynamic has become impossible. The more she loses control over her mind the more she is a control freak. Everyone tells me the bandaging and colostomy are “my business” and then my mother screams at me to “stay out of (her) business.” Today she was fine but the whole last week…ugh! I am hoping more attention and safety will be possible at the MC. And although I will still be responsible for the colostomy, the mC has a staff geriatric MD w/nurse practitioner, a staff geriatric psychiatrist, a social worker, support groups for caregivers and events/lectures related to dementia. Of course, I am so attached to the aides and residents at her AL I am already feeling sad, but this time, pushing ahead.
Boy, it’s easier to deal with kids than parents, isn’t it?? If this was my kid, I could just make the change.