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gdaughter Asked August 2021

Looking for comments if you can be understanding....re hospice/meds. Are my demands unreasonable?

When we were first met/interviewed for hospice care, they made no mention of a "comfort kit" but as things progressed a nurse made a visit after mom came home from ER visit a few days later and asked about it, was surprised we hadn't received it or a hospital bed and went about ordering the usual drugs via their pharmacy to be delivered the next day as well as the bed. This was almost 3 months ago now. Once mom was in the bed she has not really gotten up and out of it, and I still have questions about that. IE SHE WAS NOT prior bedbound and it's as if they have made her that way, not providing any guidance or equipment to help her up and ambulating. There really is no reason for her not to be aside from now having healing wounds on her heels. Besides that, we were not asked about the comfort meds, simply accepted it as part of their SOP. We are not pill/drug takers, me especially being unable to swallow them. Today, for the first time, a NEW nurse yet again asked to SEE THE ativan and morphine. She opened the pharmacy bag and saw the seal on the morphine was still intact, and claimed (I'm not sure) to have counted the ativan. NO I shouldn't be insulted, Yes I recognize she was probably only doing her job, but yet no one else had gone that far. I am offended. Had I known I would be treated down the road like a criminal (per this nurse they are typically checked at EVERY visit) I'd tell them to keep their comfort kit. I think the only one getting any comfort is the agency who can easily say to give the patient the meds without making a home visit. Cheap/easy/ any bad outcome can be blamed on family....
I REALLLY have come to like the regular nurses we have and so have resisted jumping ship....but I know some of you have reached the conclusion long ago I should....added to this as I may have mentioned....the aides are using a protective cream from McKesson Co. and the aides use it like it is water. I think there has been more left on the bedding or washcloths and towels for me to try and get out (a pink stain) than on mom. I also find the scent very annoying. Oh, for sure it could be worse...but I do have a history of being sensitive to scents...So I did a little research and found EVEN this company makes an UNscented product, and another company 3M makes a product in various forms...cream, wipes called Cavilon that provides a skin barrier and one of them even may last up to 7 days worth of protection! So I brought this up and the nurse was going to contact the team leader. I have even offered for us to get it on our own, but I wonder if that would/should be covered. Other discoveries of the day: I found a box of Irish Spring (BLECH) soap in the powder room. I expected that was my father's doing since he belives the deer are eating his blessed tomatoes and he'd heard it keeps them away. In fact it turned out it was the AIDES who had brought it because they like using bar soap although I'd never seen them exactly using it on mom. I found this outrageous to take advantage of someone unable to voice her opinion due to dementia with a product even SHE would find offensive, let alone me. I also observed a very dirty spot beside the bed where the aides typically stand when tending to mom. Today I realized they were dripping the washcloth taken from the basin of water beside them , and no doubt the dirt from the bottom of their shoes when wet transferred to the carpet. But no problem for them as they don't have to clean it. Are my demands unreasonable? Should our homes and family members be respected? IS it asking too much? Oh, and one more....apparently the attentive nurse of the day did not see what I did: A big wet spot on the bottom sheet mom was lying on. I don't imagine that's a good thing when bedbound and there is a concern for sores developing....but they then took a couple toss pillows and placed one over the spot...I had made the covers with expensive material.

gdaughter Aug 2021
I find it reasonable to provide these meds, assuming the patient has the ability to consume them if that moment arrives. And if would have been far less offensive if one is told at the time they are regularly checked. Far easier also if they have seals on the containers and can easily tell they have not been opened. It doesn't seem, to me, that they have their act together, and clearly this nurse must have been extremely rigid compared to the others who obviously have a sense of us and our household to know the likelihood of any abuse is nil. In fact today I realized considering that I had heard at least twice about keeping these meds in the fridge, that it is the aides who would be able to have easy knowledge/access...and what IF the count was off and something was amiss? THEN what do they do. What if the count was off originally when delivered from the pharmacy? I put my trust in these people and still could have wound up accused. Even the delivery person could have taken something. This is all just more stress for me and way more than I bargained for. I had higher expectations of hospice care and this one in particular. But maybe instead of writing here I should do so elsewhere with the ultimate intent of publication so people know what they're getting into. I have not yet done my own POA and I will be making very specific directives because of this. IF the aides don't like the odors they may encounter, that is THEIR problem. Fortunately I have not detected any offensive odors from my mother. It may not have been done to be offensive, but it was grossly rude and ignorant of both the patient and their family. Very presumptuous. Family should have been consulted and asked. ANd for the record from the beginning body wash and shampoo and other essentials have been provided, while they continued to use hospice provided supplies of the same.
As for mom getting up, just prior to hospice involvement she was UP and active enough to do sets of steps at will and go outside in front of our house or on the patio in the yard. She wound up for a day and night in the ER because she spent a night basically on the floor unwilling or unable to go up the stairs as usual to bed. When she was brought home they placed her on a sofa in the family room which is where we had the bed placed. The bed originally came with a short bed rail and on the first or 2nd day, she got around it and was up in the kitchen (having done the 5 steps on her own) and in the fridge as was typical for her. Longer rails were brought...I'm wondering if we should have them removed totally so she could get up on her own, but now of course there is risk of falling simply from being off her feet for so long.

againx100 Aug 2021
Some of these things could probably be easily remedied. By you, unfortunately. But it's your house and if the mess and smells are not OK with you, offer solutions. Here put this waterproof thingy where the water is getting dripped. Here is a mat for you to stand on so the dirt from your shoes does not grind into my carpet. It's kind of ridiculous but some people probably do not have as high standards as you do or are just not really paying attention. I am not implying that your standards are TOO high, but I think you can nicely and pretty easily remedy some of these annoyances.
gdaughter Aug 2021
While I agree, the burdens put on me as the primary caregiver are getting to be more than I think they should IF I am dealing with a high quality agency. These aides are supposedly state tested NA's and I shouldn't have to stand over them to direct or supervise them. They should have some damn common sense and pay attention to what they are doing or not. I find myself spending MY time shopping to remedy the issues they are creating and I resent it. But as you well pointed out, it's on me, and I need to speak up to them, or to their supervisor or the team leader who smartly didn't call today if she heard anything. I think my standards are reasonable. I am only asking for their respect and consideration, but clearly their standards are far lower and they don't likely take care of their own surroundings. The hospice providing supplies I am guessing are a body wash that rinses of easily and well for the bedbound and I would tend to guess that bar soap may leave a residue which I can't imagine is good for patient care when someone is bedbound and prone to skin breaking down as my mother's has. I will discuss this further with the wound care nurse who in the end is the one whose orders are followed I believe as she works under the MD now in charge of mom's care. What the aides like is irrelevant and they have no right to inflict their beliefs or likes onto ANY patient IMO. I was out last evening and I have already placed yoga mats beside the bed as well in the powder room where they walk often and use. I also knowing I am more conscientious and caring and observant, bought a couple decorative boxes to keep the packages of underpads and briefs out of sight and not something my mother's line of vision had to constantly look at in addition to one just for the wound supplies. I also think it's way easier for those who have not dealt with the situation to comment on when it is not THEIR energy being expended. I am also dealing with less energy as a consequence of my own health, trying to work part time remotely, and dealing with household daily issues which includes currently not having a washer or dryer and needing to make trips to the laundromat especially in light of the laundry the aides are generating. Our one neighbor has been generous, but I just am not comfortable imposing. Especially when the needs are nearly daily for now.

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JoAnn29 Aug 2021
I can't tolerate smells either. Irish Spring would bother me.

I don't know what to tell you. I don't know if you are overreacting or these aides are just clueless and that this Hospice is poorly run. I react sometimes without thinking. Its your home and they should be respectful of that and your Mom. I would be pissed too if they took one of my throw pillows and thru it over a wet spot. I would also bring the dirt mark to their attention. Why are they not using a sponge?

To be honest, I would change Hospice providers but that means the equipment being traded out. Each Hospice has their own providers. But then u may luck out the new one uses the same provider.
gdaughter Aug 2021
Thank you for your kindness and honesty. I know myself well and so I am trying very hard to work with this agency and the aides and recognize all of us were raised differently and have also acquired different standards. I SO DO appreciate all they do here and elsewhere and try to accept that. They never asked for a sponge, so they have the requested supply of wash cloths which could obviously be wrung out prior to moving from basin to patient. Switching providers remains an option but I had forgotten about the equipment issue. I'm not sure how'd we even get her upright or if we can, while waiting...It sure as heck no way to make a decision, but I imagine I might call the equipment provider and ask who else uses them....and, as I said, I am fond of two of the nurses we have seen most often. As for Irish Spring...maybe summer, winter or fall is better! I mean seriously the DEER don't like it, and that should speak volumes in and of itself!
Daughterof1930 Aug 2021
When my dad began hospice the comfort pack was delivered immediately. I found it a kindness to know there were products on scene that would help in case of distress. And the contents were regularly examined, they are intense meds that some people would think nothing of either taking themselves or even selling. Of course the amounts needed to be monitored, nothing insulting about it. When my dad died one of the quick actions by the hospice nurse was to count all remaining meds, log them, and destroy what was left. Again, that’s for everyone’s safety.
There can be intense smells when a person is receiving hospice care. Perhaps scented products are preferred for dealing with this. I’m sure it wasn’t done to be offensive. Either nicely ask for unscented or decide to provide the products you prefer.
It’s hard to provide a completely flawless bed bath with a sick patient that can’t really help the process. I’m sure messes were made with my dad, the aides and I cleaned them up.
Does your mother express a desire to get out of bed? Over a few weeks it became so tiresome and exhausting for my dad to get up it became a relief to him to remain in bed

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